It Could Have Been Me

 I will start simply by saying this is my personal story, and I am not trying to speak about any specific shooting incidents. I have thought about writing this many times over the last couple of years (every time there is another school shooting in particular).

Things were very different in the 1970's when I was in grade school, or the 80's when I was in junior and senior high school. I have joked many times that I am thankful that social media didn't exist then, because it surely would have documented some of my dangerous, illegal, and stupid activities as a youth. It is not funny, however, to think about how much social media impacts our children's mental health today. Growing up was hard enough before computers. I cannot imagine the pressures the internet brings, but I can tell you my story.

My parents divorced when I was 7 years old. I don't remember much from when my dad lived with us, but have a few unpleasant memories of his harshness and abuse. I have tried to understand how I could have been such a "daddy's little girl" to someone like my father. Maybe I wanted to win him over, assuming things would be better if I just loved him more. Whatever the reason, despite the dysfunctional relationship, I was devastated when he left. My siblings were 17 and 19 at this time, and one was in college and the other in the Navy, so I felt alone. My mother and I were on our own for most of my young life. 

I was always super shy and quiet. The kind of shyness that makes you hide behind a parent and causes you to stare at the ground when a stranger acknowledges you. I was pretty independent at a young age. I walked by myself to and from school with a key on a piece of yarn around my neck (literally a latchkey kid). I am not sure if it was nature, nurture or a combination of both, but I felt responsible for other people, especially my mother. I still have a natural bent towards trying to help others, and feeling bad when I can't fix things, but I also remember lots of incidents of my mother telling me that she would die if I left her. Sometimes she would say I was the only thing keeping her from killing herself, and I bore that burden, as well as my own, for many years, 

In first grade, I saw the school social worker to help me talk about the troubles at home, the divorce, and the lack of my father's involvement in my life. A doctor put me on phenobarbital (a strong barbiturate) for a "nervous stomach" that year. Looking back, I would definitely diagnose myself with depression and anxiety. I was the smallest person in my class for several years, and remained one of the smallest through middle school. Being small and shy, you might imagine how it could be a recipe for being picked on. I was bullied a lot through grade school, and it got worse in middle school, especially as my peers learned I lived in subsidized apartments. 

It is really hard to explain in a few paragraphs, but I was traumatized by our family situation, and the bullying was relentless. I was broken. Besides the school social worker and the barbiturates, there was really no other help. Counseling wasn't really a thing back then (or at least it wasn't offered to me). My mother did her best, but she was also dealing with depression (or not dealing with it would be more accurate). So from a very young age, I was exposed to a dysfunctional home life, then felt the pain of divorce and subsequent abandonment. Finally, the bullying at school added the final ingredient to the recipe that shaped who I was.

I came home and cried almost every day for years. During high school, the crying was accompanied by a constant request that we move somewhere else and start over. I know now that moving would not have fixed the problem, but it sounded like a great idea as an adolescent. I wanted to die, although I never actually told anyone that. I was also a VERY angry person. I was mad at my dad for leaving and for the kids at school who were vicious. I spent many hours planning how I would run my dad over if I ever saw him again. I daydreamed about hurting him like he hurt me. I wanted to be liked, and pushed myself to exhaustion to be "perfect" so the bullying would stop, and I would have friends. With the anger being pushed down, and the constant striving to do better, and yet always falling short, I was a power keg waiting to blow. By high school, I was ready to fight any one, any time, for any reason.

When I finally got counseling in my early 20's, our counselor said he wasn't surprised I hadn't snapped and killed someone in a fit of rage. He wasn't wrong. I would have done anything to make the pain stop; to end the bullying. If social media and round the clock world news would have been available to give me ideas on how to go about taking care of my problem, I very well might have made it on the 6 o-clock news, and not for good reasons. When I hear of another school shooting, I can't help but think "there but by the grace of God go I." I never really wanted to hurt someone else, as much as I wanted others to feel the pain I felt. I wanted the pain I felt to stop. I can clearly see now that hurting myself or others would not "fix" me, but as a child or adolescent, whose mind isn't fully developed, it seems logical in the midst of the deep psychological pain.

Some of you might think you aren't capable of that kind of evil, or would never hurt someone else. Others would say you have never felt pain like I am trying to describe, and so you can't believe you do something that drastic. When I hear people speak of the shooters as "a monster" or "pure evil", I can't help but think defining them as different from ourselves makes us feel better somehow. I can imagine the pain and mental anguish that leads a person to consider doing anything to make it stop. Each case is unique, and I am not speaking of a certain person here, but not everyone who commits a mass shooting is a psychopath. In fact, when I say that it could have been me, I believe we all are capable of hurting other people. I know I was. 

We are all capable of doing things we would call "evil". No one likes to admit it, and many of us might find it impossible to believe. 

Have you ever wished someone would "get what's coming to them?" 

When a reckless driver weaves in and out of traffic, coming dangerously close to your car, do you think he ought to wrap that car around a light pole? 

Have you been glad when someone you dislike goes through something terrible? Would you smile as you say "karma's a bitch"? 

I think if we would be completely honest with ourselves, we would admit that we have all had thoughts like these. Occasionally the groundwork has been laid in such a way, that a person actually follows through with some of those thoughts. 

The Bible is clear that the hearts of men are "deceitful above all things, and desperately sick" (Jeremiah 17:9). Without the grace of God, and the transforming power of the Holy Spirit, I shudder to think about who I would be today. I hope we can all pause, and instead of passing judgement on others, begin to pray for those who are hurting. Reach out to people in our neighborhood and community. Maybe we can all be a little slower to pass judgment and a little more intentional about looking for ways we might help.

May we be faithful in getting to know those around us, loving them, letting them know we are here for them. I wish someone would have been there for me in my youth. I am so thankful that Jesus Christ has changed my heart, saving me from who I could have been, and opened my eyes to the truth. 

Until Next Time~

Shari

P.S.

This may be the first time I have done this, but I wanted to add a couple of things now that I have had a couple of days to think more about this.

1. Not having a gun did not stop me from thinking of ways to use my vehicle, a knife, thinking of ways I could make it look like an accident, etc. Any one with this much hate and pain won't be stopped by lack of a weapon, but also...

2. My personality (I am ISTJ and an enneagram 1w9) is such that law and order make the world make sense to me. That combined with my family life/training made me highly sensitive to "right and wrong". I was eager to do the right thing, be perfect, make people like me, that if I ever would have followed through on my evil thoughts, I think the counselor may have been closer to the truth when he told me that in a fit of blind rage, he thought I would hurt someone. He went on to say that it would likely have been an "innocent bystander who took my parking spot" and not the people whom I actually hated and wanted to hurt. 

3. Many children have difficult/abusive family situations like I did. It most definitely impacts a child, but personality types and teaching they receive all make a difference in the result. A good home life isn't always a recipe for a well-adjusted child, like a bad home life doesn't always result in a bad outcome. it is messy and complicated. Over the years, there were teachers, karate instructors, and police officers in my life that stepped in and really made a difference. Go, be that person to someone else!

I just thought I would clarify some of the how/why of what never ended up happening in my life. I am SO incredibly thankful that I sought help before any of those things happened, or my life would look much different now!

If I Died Today (What Would My Friends Say?)

 A part of me wishes to remain silent. I wonder if speaking even does any good. Will I just be one more voice among the thousands of voices that will likely only be heard by those who already agree with me? Is there any value in speaking up? I hope so.

After seeing that the term "6%" was trending on Twitter, I looked to see what it was all about. I also quickly found many FB posts regarding the new CDC number breakdowns of all the coronavirus deaths. We have known all along that COVID-19 disproportionately impacts the elderly, people of color, and those with underlying medical conditions (AKA co-morbidity). The numbers did NOT change, but the CDC statistics now clearly show that 6% of the deaths were young, healthy individuals with no underlying medical problems. The other 94% of the deaths involved age and/or health issues; however, the virus is still the reason for their deaths. Heart disease, stroke, diabetes, obesity, and other conditions do make your chances greater for having a serious case of COVID-19, or dying from it. Every one of those deaths was just as much caused by the virus, and every one of those deaths matters!

If I had contracted the coronavirus and died today, my death would be in that 94% bracket, but I MOST definitely died because of the virus. My neurological condition perhaps puts me in a higher risk category than you of serious illness or death from COVID-19, but my disease by itself is not deadly, thus the virus would still be the precipitating event in my untimely death.

If I died today, what would my friends say? Sadly based on social media, I think many would say she was "older" and "sick" so she wasn't worth shutting down an economy or wearing a mask. Others would blame the people who are out having parties, not wearing masks, and "don't care about others." Neither would be accurate, but I see both views on display every day.

The division in our country causes me so much heartache, and I find myself in tears this morning. Sometimes all this bickering is exhausting, and it saddens me to see fellow Christian sharing memes of "sheeple" instead of the gospel. I will continue to pour my heart out to God, but would you join me? May He show us all mercy, and help us to love our neighbor as ourselves. Christian brothers and sisters who say ALL lives matter, surely each and every soul lost to this virus, regardless of any preexisting condition, is a tragedy, most especially those who die apart from Christ.

How did we become such a polarized and hate-filled nation? I ask myself what part have I played? Maybe you are willing to ask yourself the same thing?

The facts and truth are harder than ever to discern. As an example, the CDC was once a nonpartisan organization that presented the medical and scientific facts to educate the public. It has recently become more political, changing policy due to politics rather than science.It should concern us ALL that any group/organization/company would only speak along party lines, never listening to the other side. We must be vigilant and discerning, my dear friends!

While we live in an age of information overload, the truth gets lost in a sea of rhetoric and misinformation, but we have a duty to speak and defend the truth. Especially as a Christian, I know the importance of studying and searching to uncover the truth, being slow to rush to judgment or point fingers. May God help us all to listen, discern, and seek the truth! May it start with me. May God give wisdom and humility freely to all who ask, as they are both much needed!

You who are angry and tired of fighting in the midst of injustice and inequity. I hear you and I see you. Would you share your personal experience and pain you have felt from racism with me? Would you allow me to share my concerns and fears as well? Can we move forward together, giving each other grace to grow and learn?

You are fearful that your rights are being striped away, and the government is taking your freedoms. I hear you and I see you. Would you join me in praying for our nation? Will you tell me what worries you the most? Can I share with you how hot and uncomfortable wearing a mask is, but also explain how it can help protect me, and makes me feel like you care for me? Might we come together in our love for Christ and one another, extending grace as we grow and learn? 

Please don't turn a deaf ear to your neighbor! Maybe we can all agree that these are difficult times! We must be slow to anger, slow speak, and quick to listen. Seek the facts, and the science, and then filter them all through the Scriptures. Be willing to hear the pain and stories of others, showing compassion. Turn off the news/social media and go start a dialogue with your neighbors. Each of us has differing views, unique experiences, and contrasting cultural backgrounds, yet we might all find unity in Christ, and I pray that we will. 

Until Next Time~

Shari

P.S. If you made it this far in reading my post, please pray for our upcoming trip back to Mayo Clinic September 8-10. Will post some updates afterwards!

Shattered Comfort

What can I say about the start of 2020 that you haven't already been made aware? Global pandemic, protests, riots, and SO much political bickering it has, quite frankly, become depressing to be on social media at all. Who could have ever predicted that asking to wear a mask would become a political divide? I am not a theologian, politician, or historian. I am a suburban, white, Christian (reformed), woman with a disability, who feels a bit like giving up. What that means exactly, I haven't quite figured out, but what was once my comfortable little corner of the world, now seems disquieted.

Racism has been the topic most recently dividing my social media newsfeed into an "us" and "them." There seems to be no end to those divisive words thrown about on any given topic. I have just been shook from my comfortable suburban life these past few months, which is a good thing. I have said before that my prayer, my desire, is that God might show me areas in my life where my thinking has been wrong. That I might never get too "comfortable" thinking I have it all figured out. I pray He would reveal to me those hard to see personal sins and my lack of concern and compassion. Give wisdom in areas of ignorance, and grace to change wrong beliefs. Lately, I have prayed for forgiveness in turning a blind eye. So easy to get wrapped up in ourselves, our family, our problems, and forget there are others.

I am sure we all have our favorite spot to sit and read, or that well-worn seat where we wrap ourselves in a blanket and binge watch our favorite show. We have our routines. Each family settles into their "normal" busy lives. We get very comfortable there, don't we? There is a sense in which we think that other people's lives look much the same....or maybe we don't think of their lives at all.

I have noticed the defensive posture many of us take on social media (a posture we may not be so bold in maintaining if we were face to face). Someone calls mask-wearers sheep, or non-mask-wearers are heartless people who don't care if they infect others. It is hard not to put up your shield when approached in such a strong way. We may feel the posts on racism don't include us. Our comfortable live is shaken thinking about some of these issues. And it should be!

If our first thought on any issue is to indignantly reply, "Not me!" instead of taking a close and honest look at our lives and hearts, we have chosen a prideful and dangerous response. I have learned so much about the virus, studied medical journals, read peer-reviewed studies, learned about COVID-19 as the doctors around the world are learning about it. I have also read YOUR posts, both sides of the debate, and then I have tried to form my own (hopefully wise) opinions. BUT I hold that all loosely! So much is still unknown about this new virus. I cannot dogmatically hold firm to what I believed 2 months ago, because new information is coming in that changes that. I must be willing to learn and change also.

The same is true of the recent talks of racism and the Black Lives Matter movement. I have learned more in the last few weeks about black history, reading personal stories from people of color, and have more fully realized that all of our experiences are NOT the same. We do not all have the comfortable suburban life. We do not all have the same struggles or opportunities. I do not think all white people are racist. I do think all people of all colors need to be willing to learn and listen. If someone accuses you of being a racist, I understand the tendency to assume the defensive posture. No one thinks of themselves as a bigot, but we do all have biases. We all have difference experiences/backgrounds which shape our worldview. We must begin to understand that our lives, in fact, do NOT all look the same on a day to day basis.

This hasn't been on the news much if at all, but there have definitely been other forms of discrimination made clear to me these past few months as well. Ageism and Ableism.

Ageism: "Ageism is the stereotyping and discrimination of individuals or groups on the basis of their age; ageism can take many forms, including prejudicial attitudes, discriminatory practices or institutional policies that perpetuate stereotypical beliefs." (source World Health Organization)

Ableism: "Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that people require 'fixing' and defines people by their disability. Like racist and sexism, ableism classifies entire groups of people as 'less than,' and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities."

(source accessliving.org)

I am saddened to see how hard hit nursing homes and group homes for individuals with disabilities have been hit. To be clear, these are not the expensive, private homes that you may see in the upper-middle class neighborhoods. These are the state and federally funded homes that Medicare covers. Places like my grandmother lived. I remember the horrible smell, and the patients left sitting alone in the hallway. Others wandering around half dressed, and seemingly uncared for. We only went to visit her a few times. Our society doesn't place a whole lot of value on the "old" or the "infirmed". If you can't contribute or produce, you don't have much value. That may seem harsh, maybe you feel that impulse to assume a defensive stance. You may not feel that way about your own mother, but that doesn't mean you aren't ageist, much the same as having a black friend doesn't mean you aren't racist. 

People with disabilities are an often overlooked and neglected group as well. Homes like I mentioned above are frequently places of abuse. The National Institutes of Health estimates 1 in 10 are abused in settings like this. Are you aware of this? Recently a man who was living in a care home like this was allowed to die of COVID without treatment, because doctors deemed his quality of life not worth saving.

I have personally experienced ableism (and sexism, but that is a story for a different day!). The ableist says things like: "Such a shame, you're too young to be stuck in that chair" or "I would want to kill myself if I had to deal with what you are going through." (real life examples)

Sometimes it is blatantly obvious, other times it is more subtle. Maybe just a superior attitude of "I can do it better/easier" or condescending "you poor thing." People talk to me like I am 3 years old sometimes, "Look at you, doing that all by yourself." It is more than just words, but again, a systemic problem. Society as a whole does not give any thought to people who are not the same as them. In this case, not the color of my skin, but the ability of my body. Could be missing limbs, or paralysis. Might be a developmental issue or genetic disease that cause you to move, act, speak differently or not at all. Maybe you are deaf or hard of hearing. The world around us is built by and for people who look and move a certain way....."normal."

I have not counted, but conservatively half of the places I go have accessibility issues. Even places that have been made by laws to add an accessible bathroom, block the hallway with chairs or boxes. The worst is all the hospitals and doctors that have step-on garbage cans in the accessible bathroom (I have mentioned this issue before). Recently I had a test done at a local hospital and the bathroom in the room had the handicapped accessible plaque. Unfortunately, it was an old surgical room turned into the testing site, and the sink only had step-on (foot controlled) water. I can stand, but am not stable. Just trying to balance on one foot to step on something to wash my hands is very difficult, and puts me at risk for falling. Others may not have use of their legs, and would be unable to clean up after using the bathroom. I came out after my ordeal, and mentioned to the tech about the foot pedals not being accessible, and they should fix the bathroom to be ADA compliant or removed their sign. Her response is an example of ableism. 

She replied, "It has a grab bar, so that makes it accessible."

Me, "No, much more is needed for a bathroom to be accessible. If I have no use of my legs, how do I wash my hands?"

She thought for a minute and said, "Maybe the person who hung the sign didn't think about someone having legs that don't work, do you think that's it?"

me *blink* *blink* "Yeah, I think that's it."

This seems like a battle I can't win. Maybe you think that ignorance doesn't mean you are ableist. Maybe you are right. Maybe you are wrong. My main point about all of this is that we don't need to attend a white nationalist rally to be racist, or knock little old ladies down in the street to ageist. We need to open our eyes to see the differences around us (color/race, age, sex, ability, etc.), acknowledge and honor those differences. Recognize that when you say "all lives matter" it doesn't excuse ignorance of the situation. All people's lives do matter. Absolutely! And because they do, they are worth our time to get to know, to learn about their struggles, to love, and to treat like a fellow human being. Stop using terms like "us" and "them" and start seeing all of us and "we."

So far, 2020 has been the perfect storm in a sense. Isolation during the shutdown. Perhaps fear of the virus, or for loss of liberty. The nation watched George Floyd being killed, and the desire for justice gave way to protests and riots. We all want to be heard and seen. Take some time to learn about people that are different from you, if all our lives matter.

It is so easy to stay in our comfortable corners of the world, and pay little attention to things that don't impact us. Lately I feel shaken, broken even. There is SO much injustice, so much passing the blame, so little self-reflection. 

So, I pray. 

I pray for myself. May my eyes continued to be open, and may God show me how to contribute in a meaningful way. May He continue to guard my tongue, helping me to respond in love to people who show me ableist attitudes. I pray He helps me to truly see and hear the people created in His image; to love them as He loved me.

I pray for all of you also. May each of you set down your shield, and be willing to read things from the other person's perspective. May we all compare these things to God's word, being willing to grow, change, and repent in areas where needed. May we seek to reconcile and love those across the divide. 

I pray for the US, that we might not just go back to our comfortable pre-pandemic lives, and forget all that 2020 has revealed to us. May God be glorified in our lives, and throughout the world!

Until Next Time~
Shari

Who I've Become

If you have met me in the last few years, you might be surprised to learn that I used to be somewhat adventurous. While I was never one to be a thrill seeker, I did frequently hop in the car at the last minute for a road trip, or impromptu outing with the kids. As a child, my mom would drive me into Chicago to the Planetarium (it was free back then) just to buy an ice cream sandwich from the vending machine (She swore that brand was better, and not available locally). I think her crazy ideas like this rubbed off on me!

In fact, if I think back over the years, even though I have always been introverted, there was rarely a day I didn't get out of the house: nature walks, shopping, museums, movies, or just yard work. Slowly over time, as our kids grew up and moved out, and my health declined, getting out of the house seemed less attractive, and more problematic.

Chad and I were talking about this a couple of days ago, and it has been on my mind ever since. I am very content in my day to day life, but my world has definitely shrunk. I routinely go to church on Sunday, and consider it a victory if I have nowhere to go until church the following Sunday. I still love the outdoors, shopping (especially at thrift stores), and even road trips, BUT (and it is a big but), things have just become much more challenging.

I can no longer just wake up and decide to be spontaneous, heading out for the day to a local museum or park like we used to do. For starters, on the rare occasion that I feel well enough to head out for the day, there has to be much more planning. Medications, medical devices, mobility equipment, etc. are part of my daily life. I have to think through the outing to decide what needs may arise. How long will we be gone? How far would I have to walk, or is it wheelchair accessible? Is there van accessible parking? (especially if I am alone, because I frequently get stuck unable to deploy the ramp either because there are not enough handicapped spots, or someone has parked in the access aisle/striped lines) The list is LONG.

Sadly even when we plan the best we can, trips frequently end with an serious increase in pain. Pain rises throughout the day normally, but increased movement and lengthy activities will increase it more rapidly. Sometimes, I do a cost-benefit analysis and decide the trip just isn't worth the pain.

There is usually some stress and anxiety involved in going somewhere unfamiliar also. Many trips end up disappointing when we discover we can't get around by wheelchair, or there are no bathrooms I can use. Even stores with wheelchair accessible entrances often have narrow or blocked aisles, racks that are too close together and inaccessible bathrooms. Besides being more physically difficult to navigate, it is mentally draining for me as well. I struggle with feeling unwelcome and like I am constantly in other people's way (some of this is my own insecurity, but also because people will literally say it out loud).

When I do have a "good day" it just seems easier to stay home, where it is comfy and Chad has made it all very accessible to me. I can keep myself occupied with crafts, jigsaw puzzles, puppy cuddles, reading and many other favorite activities within my home. Easier for sure, and it makes me happy 😊

Sometimes though, I do miss going out. Frankly, I don't often visit a clothing store to feel the fabrics, browse clearance racks, and try things on just for fun anymore. Having the endurance to do all of that is rare at this point. (even getting my leg brace off and on is quite the workout. The struggle is real, people!) To some degree, my low pain level days seem wasted by going out and struggling to do things that used to be easy and enjoyable....so I just stay home, and use that energy on something that truly is enjoyable.

A little over 10 years ago, when I was healing from the life changing surgery on my left leg, I would have never dreamed that I would become a hermit! I have read about disabilities being isolating, and families with special needs children feeling alone, but didn't really understand why, until now.

I am very thankful that God has given me a contented heart. The introversion I once saw as a huge hindrance, I now see as a true blessing. I don't need a lot of activities or people to have a pleasant day. Seeing a dear friend, talking with family, or keeping busy at home are all real treats. I do know that there are plenty of people in the disability/special needs community who DO need more human interaction. Extroverts are not immune to medical issues, and while I am okay being more isolated than I once was, some people are struggling with loneliness and depression.

Honestly, this whole issue continues to be a struggle in my marriage. Chad is way more social and adventurous than I am anyways. I don't want him to be miserable never going anywhere, and he doesn't want to make me go somewhere knowing I will be in more pain. We run through ideas, evaluate how I feel, imagine how draining it will be and decide if it is worth it or not. I do more with him and for him than I would ever do on my own. Some days I push myself over that hurdle, get out and enjoy the day with my husband. Sometimes it isn't even as hard as I imagined it would be!

This unexpected change in my life has been a slow, sanctifying process. I have learned to be truly content, needing little fanfare to keep me entertained. I appreciate the little things in life more. I appreciate friends who are willing to drive to my house for a visit. Maybe you are able to visit a neighbor or friends who is going through something right now and could use an encouraging word, listening ear, or a push to get out of the house. (Don't push too hard, just offer!)

I am thankful that God has given scientific and technological knowledge to many individuals who bring us new innovations (like the internet), and all the good things that come from that to help us daily. There has never been an easier time to stay home and shop from the comfort of your couch! I am beyond grateful for a Savior, who is ever by my side, good day or bad. Maybe you could bring His word to someone who needs it today!

Until Next Time~
Shari

We Are Not That Different

In my medical journeys I have met many different people. I can put them into two groups for the purpose of my blog today. There are pessimists and optimists. In other words, there are people that can't see anything beyond their pain and loss of ability to do what they enjoy, and there are others that focus on what they still can do, and the good things in their life. My doctors believe that the people who can focus on the positive have better outcomes than those who don't (or perhaps can't).

In waiting rooms across the area, I have met many people who feel life isn't worth living because of their disability, diagnosis, or pain. I have also met people who seem happy despite their struggles. In most areas of my life, I think I probably fall firmly in the pessimistic camp, but if you have read any of my blog posts you might see that, by the grace of God, I am able to see the positive blessings in my life much more clearly than the struggles.

So what does all this have to do with my post today? Not much, except I wanted to point out the way we tend to group people into categories. We think in terms of black and white, even when we don't admit it. I personally like thinking in black and white terms because it makes sense. It is a neat, orderly way to view the world, but the problem is that the world is messy and gray. It took me years to figure that out. This is what my post is about. I am straying from my normal medical post to broach the subject of *gasp* politics.

I have witnessed an alarming trend the last few years, and I want to start a dialogue. We are more aware of bullying now than perhaps any other time in history, and yet my social media newsfeeds are filled with adults calling each other, groups, political parties, and specific people idiots (and much worse). Sadly and frequently these are the same adults that I see standing against bullying for their children, and fail to see that they are engaging in the same behavior.

Here is the truth: You are NOT an idiot, and neither am I. We are human. We make mistakes, we fail, do things we should not, say dumb things sometimes, and the list goes on and on. We have all been there. We have believed things we later discovered were not true. We jump to conclusions. We pass judgment (frequently without having all the facts). We criticize and name call, instead of truly trying to understand and learn from people who think differently than we do.

I have friends on both sides of the "aisle". Liberal and conservative. Christians, atheists, and other religions. Different races, classes and backgrounds. No matter what each of us believes, the truth is we are all human. Fundamentally the same. Largely comprised of oxygen, carbon, hydrogen, nitrogen, calcium, and phosphorus. (for you Star Trek TNG fans we are "useless bags of mostly water" 😃) When we boil it all down to that, NONE of us should feel superior.

As a nation that once prided itself on standing "united", we are the most divided we have ever been. We have lost the ability to have a civil conversation on many "hot button" issues. We dig our heels in, read things that confirm our own biases, and watch news stations that feed us the spin they know we already agree with. In a lot of ways, social media makes this all easier. "Trolls" are free to roam the internet and say things no one would ever say to someone's face.  It emboldens all of us to some extent. We "like" and "share" with little to no effort, and also with no confirmation of facts. We believe what we believe and are not likely to listen to groups who espouse contrary views.

I only bring this all up today, because yesterday, as I scrolled through social media, I saw posts from one group of friends who were calling certain political people morons. The very next post, from my other group of friends, was calling a different person crazy (which is a word I dislike for many reasons), and I felt disheartened. First, it is hard to hold out hope that our country can be united again. Do you remember the afternoon of September 11, 2001? Do you remember that feeling? Remember that you hugged your neighbor, despite their political or religious leanings? Can you fathom today that a random group of strangers would stop and pray, even if they all believe differently, simply because they had to do something....TOGETHER?

I feel sad that our nation that this era is punctuated with bullying at every age. That we are quick to name call, and spread "news" without really knowing it's source, or the bias of the person reporting it. I am especially downtrodden when I consider my dear brothers and sisters in Christ, fellow Christian believers, who post the same inflammatory, derogatory remarks, despite knowing that God clearly calls us to love our neighbor.

So, here it is. I love YOU. I believe with my whole heart that you and I were both created in the image of a holy and just God, and for that reason alone, you are deserving to be listened too, to be loved. We can love our neighbors (and are in fact called to do so) because He first loved us (1 John 4:19, Mark 12:31).

It is true that life has a lot of gray areas.  I pray that you might forgive me if I have ever said or done anything to imply you were stupid, or less than. I pray too that we might be able to share our beliefs in a non-judgmental way, really listening to each other, even if we still walk away with differing viewpoints.

This whole post was started because of a short clip of a documentary, and an interview of it's maker on WGN this morning. The documentary is called List(E)n. The preview shows the filmmaker bringing two people together over coffee to hear each other out. Two people on the opposite side of important issues, coming together to listen. This is how we stand united. We can believe differently, and still show respect and compassion for each other. Part of what made America what it is, is the ability to freely choose our religious and political views without fear of repercussions. Sadly, I fear this is no longer the case.

We are not that different. We are quirky and can be wrong sometimes (maybe even often?). We can be united in the fact that we have more in common than we do differences, or we can continue to see only the differences that divide. We can be optimistic and move forward together, choosing to focus on our similarities, or we can continue to bully everyone who doesn't believe the same as we do. Then maybe we can change our nation's motto to "divided we now stand". Can we start the conversation here? Tell me, what do you think?

Until Next Time~
Shari

*DING*

I recently read the book 12 Ways Your Phone is Changing You by Tony Reinke. Tony examines the ways our smart phones are changing how we behave, communicate and participate with those around us. This book is extremely convicting and eye-opening. He does not take the position that our phones are bad, or using them is evil, but in fact quite the opposite is true. He clearly flushes out the usefulness of our pocket computers. These high tech devices help us to spread the Gospel, be more productive, educate, and much more. Unfortunately, our constant connectedness can distract and distance us from those whom we are closest too. Essentially, the more connected we become the lonelier we feel. Where we used to go to the movies with friends, we now stream movies to our living room.

The book's chapters dig deeper into to each of the 12 ways Tony Reinke sees our phones impacting us individually and as a society. The titles of the chapters give a sneak peek as to what you will find inside:

1. We Are Addicted to Distraction
2. We Ignore Our Flesh and Blood
3. We Crave Immediate Approval
4. We Lose Our Literacy
5. We Feed on the Produced
6. We Become Like What We "Like"
7. We Get Lonely
8. We Get Comfortable in Secret Vices
9. We Lose Meaning
10. We Fear Missing Out
11. We Become Harsh to One Another
12. We Lose Our Place in Time

The book is well researched, and well written. It does not condemn technology, or our use of it. It does, however, point out real and present dangers that we should all be aware of. The book points out our Pavlovian dog response to the buzzes and beeps emanating from our devices. Our phones (and as a result we) are "on" 24/7. We are afraid we will miss something. We enjoy getting "likes". This can all be used in a way that can bring glory to God, but frequently it is used to distract us from our boring lives. It might be an escape for us. Our phones and computers provide an atmosphere in which we can portray our lives as something other than what they truly are. We feel jealousy and discontentment as we think we are truly peering into the lives of our neighbors and friends, but in reality seeing only small glimpses into reality.

Technology is a good thing. It is a gift from God, from whom all knowledge originates. Computers and internet have enabled me and others to blog, to share our stories, and the Gospel with people a world away. We have been given an opportunity to use a new, and advanced medium to reach others we would likely never meet face to face, and because of that, it comes with a great responsibility. We will give account for every idle word we have spoken (or written) one day. The distance the internet creates makes us feel safer to be harsher with people. We say things that we would never say if we were standing in front of a group of people. We watch things that we would never consider watching if it weren't from behind the anonymity and privacy of our own screen. This book gives us reason to pause, consider and evaluate our phone usage.

The book is well worth reading, and although it is written by a Christian author, and has a Christian bent, it's research is solid, and the message behind why we respond the way we do is important to reflect upon. You won't be disappointed, and quite possibly you will have your eyes opened wider, like I did.

Wish you all a Happy Thanksgiving!
Until Next Time~
Shari

Hard to Put Into Words

Chad and I are relaxing near Minneapolis for the weekend before returning to Mayo on Monday for more appointments and tests. Since I last posted, we met with a rheumatologist (who was wonderful). She ordered some more labs and another MRI. She thinks the latest diagnosis for all my spine and neck pain, may be accurate as an inflammatory arthritis, but it could also be an early onset (possibly genetic) form of osteoarthritis/degenerative disc disease. If it is indeed an inflammatory arthritis, they will get me in to a specialist who only treats patients with that diagnosis. If it turns out to be the other degenerative disc disease, which is not an autoimmune disease, then pain management is my only treatment to try and maintain a good quality of life.

We arrived to the "waitlist checker" line at 6:30 am on Friday to try and get the EMG done sooner (this was needed before we could try to get the other specialist appointment date sooner). We were 4th in line. The first "checker" as they are called, arrived at 5:30 am!! The first checker was called back for testing at 8 am, and providentially, another one had to leave. That left just one other person ahead of me, so I was feeling hopeful. The next checker was called around 10 am, and I knew that I was next. I prayed for another opening before the end of the day. Just before 10:30 am, my name was called, and I was headed back for the test. It didn't go quite as expected, keep reading for all the details. Sorry, but this post will be a long one.

While we waited, a couple from western Minnesota sat next to us. We struck up a conversation with them, and thoroughly enjoyed talking to them. We had a lot in common. He worked in the construction industry like Chad does. She has been a special education teaching assistant, for the past 18 years, which is similar to the work our daughter, Katherine, does. During our talk, we both mentioned attending church on Sunday, so I asked where they went to church. We had a great conversation about faith, and the importance of preaching God's Word truthfully and un-apologetically. We also discussed the medical issues that brought us to Mayo. They were going through some similar testing, but sadly it seems the husband may have a rare and deadly form of cancer that affects the nervous system. She explained this to us through tears as he was in doing his test. We were able to pray with her in the waiting room. I love that Christ binds believers together as a family, no matter where we live, or what church we go to, and am thankful we met and could provide comfort to each other for a brief time while waiting.

It has been very interesting to see the melting pot of people from around the world in the waiting areas, but it doesn't end there. I have met doctors from New Zealand, India and Portugal that are visiting Mayo for specialized training, as they shadow some of the experts in their fields of practice. The entire downtown Rochester area (that is Rochester in Minnesota, not in New York haha) is connected with subway tunnels, and bridges, and there are wheelchair ramps and elevators everywhere!  Even the smallest of restaurants has elevators to get you to the seating areas, or bathroom. That part has been wonderful! I can't think of any other place I have been that is like this place. It really is a fully accessible, "mini city" around Mayo Clinic, where you know almost everyone you see is here for medical treatment. The Mayo Clinic blue wheelchairs are being pushed all around the area, and I have seen some very sick people. We are all here for one thing: answers. We all have the same hope to get a diagnosis and a treatment plan to make us better. That provides a connection, that makes everyone a little nicer to each other in elevators and waiting rooms. The staff is also very friendly and compassionate. In Chicago, I frequently have a receptionist with an attitude, or who seems to hate their job or is having a bad day. I haven't had that experience here yet.

OK, so on with my testing story. I am laying on a table, waiting for the doctor to come in to start the EMG. A tall, 50-something, doctor walks in and says hello. He introduces his "shadow" who is the doctor from Portugal (mentioned above). He sits down and starts to type, but then stands up and leaves the room. I sit up to see if I can read what he was typing and I see that he entered his name under the physician heading "Dyck." When he comes back in, he explains he was shocked to see me today. He says he received a phone call the night before from the radiologist who told him that he needs to see my MRI scans. Dr. Dyck continues by saying he is very familiar with my name and case, because he spent the night reviewing my records. He had no clue that I would be a checker, and end up in his testing room the next morning. Oh wait, it gets better!

In 2013, when we had considered Mayo Clinic previously, I had been reading medical journal articles, and saw that a few of the ones that seemed to be most relevant in my case were all written by a Dr. James Dyck from Mayo. I did a lot of sleuthing, and found an email address from him from the medical school here where he does lectures, and I emailed him. So, as it turns out, I was as surprised as him that we ended up in that room together yesterday! Back in 2013, he asked the clinic to offer me an appointment, which they did, but it was like 8 or 9 months out, and we were worried about not starting treatment soon enough. We ended up deciding to not take the appointment, and go with the second opinion doctor at Northwestern, who comes to Chicago one day a month from Mayo. Leading us down the past 5 years pathway of trial and error treatment plans that lead me here to this room on this day. Again, I say providentially, as there are no such things as luck and coincidence.

I asked if he was Dr. James Dyck, and mentioned to him that I had written to him, and of course he gets thousands of requests, so he doesn't remember me, but I did learn that his father (same name) is the oldest doctor on staff at Mayo, now in his 90's! Dr. Dyck Sr. is the doctor that first identified, and named the disease CIDP, which has been mentioned before in my case. Dr Dyck Jr. performed the test, and because he was very interested in my case, and with the results he was getting, I had an almost 2 hour long test! He sent the nurse and staff to lunch, and stayed there with me, literally testing every muscle in my body, including my face (that was strange)! He refers to his father as Dr Dyck "The Greater" and himself as "The Lessor" :)

Since this post is already long, and there is a LOT of medical terminology to wade through, I will try to keep this short (hahahaha) and simple. (Friends- if you want a more detailed explanation, feel free to call over the weekend).

Dr Dyck had plenty of bad news.

1. My EMG and MRI were clearly abnormal.

2. He said that the nerve tumor they removed in 2009 should not have been removed, since it was benign and removing it would make me more disabled than leaving it. I have heard this from 2 other doctors.

3. He suspects based on the current testing that I do indeed have CIDP (he is still waiting for other testing, and perhaps a biopsy to definitively diagnosis this, but he seems fairly confident.)

4. Based on everything he has seen in my case, and the fact that he has seen 6 other patients who were wrongly diagnosed with a neurofibroma, but instead truly had CIDP, he suspects that I never had a tumor. He thinks it was CIDP all along. He has requested the pathology slides from that 2009 tumor resection to see them for himself, but again, he thinks he will find that the pathology and diagnosis were wrong.

5. Recent nerve issues in my arm are also likely the beginnings of CIDP in my upper extremities.

There were more tears. Right now, I am not certain of anything, but the implications are staggering. If he is correct, I had a surgeon cut out 7 inches of a large nerve to my left leg to remove inflammation, and not a tumor, leaving me forever disabled (2009). That alone is bad enough, but sadly it doesn't end here. I had a second surgery to try to reconnect the nerves that were cut out in 2010. The first surgery caused my gait issues which have led to a knee replacement (2011), a tarsal tunnel nerve release in my ankle (2012), increased back and neck pain because of the spinal arthritis, as walking has been so much more difficult since 2009. I then developed a neuroma along the original incision, and had to have another surgery to fix that (2013). (For the sake of shortness, I will just say that we had already known the original surgeon did not do things he should of done to aid in my recovery, which very well might have enabled the nerve transfer to keep the muscle functioning, leaving my leg a bit weaker, but not paralyzed).

CIDP is also not the best thing to be diagnosed with, but in some ways the fact that he feels many of the nerve issues I have can be explained by one diagnosis, and not many different diagnoses that are not related (which is what we keep hearing) sounds good to me. What doesn't sound good is thinking through that last paragraph. It is almost too much to think about. It has been a struggle the last 24 hours to stop my mind from pondering the "what ifs" even though I know that is not helpful. There is some sadness, and some anger we are dealing with, but Chad and I are both trying to not let ourselves go there. We can't get trapped in the past. My recent posts have discussed closely monitoring our expectations, and not worrying about tomorrow. Today is the day we need to be present in, and today I am reminding myself to also not live in the past. Imagining what might of been won't change anything but my attitude. It will only create anger and regret and bitterness.

I still have many more appointments, and will likely have to stay longer and/or come back in a few weeks, especially if they do the nerve biopsy. In the meantime, I will try to not look backwards, and not worry about what the ultimate outcome will be. I will try to focus on one day at a time. Praying you all can do the same.

Prayer requests-
1. Monday morning we plan to be in the checker line early again, to try to see the peripheral nerve surgeon instead of waiting until August 23rd. Please pray we are able to get in sooner, even if that means staying an extra day or two now.

2. Tuesday, if you pray for anything, please pray for me on Tuesday! I have a spinal tap scheduled at 7:45 am and a sensory test at 3 pm. I cannot have any pain meds, no muscle relaxers, or CBD oil, nothing, not even Tylenol for 12 hours before the sensory test. I have not gone more than 4 or 5 hours with meds in months because of pain, and it has been worse with the hotel bed, doing tests and sitting in the waiting room. After the spinal tap, I have to lie flat for 2 hours on the exam table to allow the hole to close, which I assume will be uncomfortable by itself.

You are all caught up, and I will continue to update everyone who is interested as we know more. At this point, I am guessing we won't know much else for a couple days. I am thankful for each of you who continue to pray, it means the world to me 💜

Until Next Time~
Shari

If you would like to know more about what CIDP is, you can read more here.

You Suffer Too

I just returned from a weekend conference in Michigan entitled "Living in the Face of Suffering". Session titles had names such as:  "Hard Times", "Joy in the Midst of Suffering" and "Walking with a Limp" (a personal favorite). As soon as I saw this women's conference was within driving distance, I just had to register and attend. As you may know, suffering seems to be my middle name, and lately, the pain from my neck and back, combined with the neuromuscular disease causing burning, cramping, sleepless nights and inability to be as independent as I want to be, has been a bit overwhelming. All of this leads to me currently battling depression, anxiety, isolation and the accompanying loneliness.

I jumped (not literally, it was more like a slow hobble) at the chance to go and be encouraged. Eighty women gathered to hear, learn and worship together. It was indeed a much needed retreat from my daily life. Interestingly though, I went expecting it to be all about physical suffering, infirmities, and quite frankly, my situation. Turns out it wasn't about that kind of suffering, as the speaker focused more on the refining and sanctifying work that God does in our hearts.

I didn't glean ways to deal with my pain, but I did gain a greater understanding of the fact that we all suffer. Sometimes, I am so focused on my own issues, I forget to look up and notice everyone else's. Suffering comes in many forms- loss of a loved one, disability, failed marriage, mental health issues, a troublesome teen, being out of work, and the list goes on and on. And, yes, sometimes the rough edges God removes from our lives with sandpaper, can be accompanied by a lot of suffering as well.

The speaker defined suffering as "having what you don't want and wanting what you don't have." I never thought about it like that. By that definition, I think we can agree that we all suffer. The question then becomes how do we respond when we suffer or when we see others suffering. Our response is a choice. We can choose to ignore or withdraw, choose to be bitter, choose to shut people out; or we can choose to reach out to others in need and ask for help during times we have needs. We should learn to be vulnerable; letting people into our world. We should seek to be intentional in our relationships, looking for those who need support and encouragement.

There was a lot of talk about the importance of community, which has been a topic of great interest to me lately. The body of Christ is to be loving, serving, and caring for one another, and most importantly, praying! We should work to listen more than we speak. Learn to look for opportunities to serve others who are suffering. Maybe write a quick note, send flowers, bring a meal. It doesn't have to be an enormous effort. Just let them know you care, and are thinking about them. Pray how you might better serve others.

As we go through our own sufferings, we must learn to lift our eyes to the hills where our help comes from (Psalm 121). We make a choice- to either let it become overwhelming, or to reach out in prayer to God and in help from others (preaching to the choir here). The conference speaker reminded us that it is God who gives us our daily bread. Gives us joy for today. Grace for today. We are to live for today. Choose this day whom we will serve (Joshua 24:14-15). Is He enough for you? Is His Son enough for you?

God uses our suffering to mold us into the image of His Son, to sand off the rough edges, and to reveal our sin. Suffering may take many forms. These trials work in our lives to bring glory to God and for our own good. Reach out and be vulnerable! May we all suffer well and not do it alone.

Until next time ~
Shari


P.S. I just read a new book entitled "Being There: How to Love Those Who Are Hurting" by Dave Furman. I highly recommend it if you are looking for a greater understanding about helping those around you who are suffering in various ways.

P.P.S. For those of you who have asked, I don't have much to update. Tomorrow is my 5th infusion, and there is one more in December. I follow up with my neurologist just after the new year at the 6 month mark. I have a repeat MRI to see if there is any reduction in the nerve inflammation in a couple weeks. I also have an appointment for a wheelchair fitting before Thanksgiving, which may give me a bit more freedom. I am undergoing another radiofrequency ablation of the nerves in my neck to help with pain and headaches next week too (the last one gave considerable relief for almost 7 months).

I don't feel like there has many much of any improvement, but I also don't think I have gotten worse. Sadly, this was the "worst outcome" as we won't know if the chemo slowed the progression of the disease, keeping me from getting worse, or since the disease itself is slow progressing, it could be that I just haven't gotten noticeably worse. Time will tell. God is gently preparing my heart to accept either outcome, being content where I am today and learning to ask for help and prayer. <3