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

We're Not Crazy

By now, unless you live in a cave, you have surely heard of the COVID-19 "novel coronavirus". The divide in America that I have mentioned before, is now focused on the virus instead of politics, but it still gets ugly very quickly! So, whenever I have a lot of thoughts gathering in my brain, I blog about them. I thought I would add my non-medical two cents worth to this whole ordeal (aren't you lucky).

1. "Panic Buying" - Stores are relatively empty of virtually all kinds of grocery items, and definitely out of hand sanitizer, face masks and toilet paper by now. My first point that we should consider, is that people are SCARED. This fear reveals the worst of humanity, the total depravity of man shows itself clearly as shoppers fight over toilet paper. Please pause and consider the shopper behind you who may not be able to get basic supplies they need for survival. If you weren't concerned about the virus at all, you may now be worried about the lack of food, and resulting ripples throughout the economy.

If you have seen people shopping with masks and gloves, it is not always because of fear. Slowing the spread of the virus is not just to protect yourself. There are individuals that are at greater risk for contracting the illness. Some must wear masks to protect themselves or their children, so please be kind. It is so easy to laugh and think they are being ridiculous, like this mother who experienced shaming as she shopped for her family.

This is an opportunity for the body of Christ to reach out with the only message that can calm a soul, the healing balm of the Gospel. As a Christian, I should be wise, educate myself about the virus, be considerate of others and try not to spread the virus. I should recognize this fear, be understanding, listen, and spread the love of Christ instead. Hopefully we can all give consideration to others, and share some of our excess supplies with those who may have very little.

Another thing to consider about the excessive hoarding is the fact there are people with compromised immune systems that need some of the items that were bought in large quantity in the early days. (Read this article for a personal perspective). This leads to my next point....


2. "Price Gouging" - The market generally allows manufacturers and store owners to recognize demand for certain items. They lower prices to help get things sold that aren't selling (think clearance racks). They raise prices to slow sales when items are flying off shelves, while they increase production. Times like this bring out the greed in our society. Some people in an effort to make a lot of money, bought supplies so they could turn around and sell them for a huge profit. (This guy is stuck with 17,700 bottles of hand sanitizer) Again, this is our opportunity to share with those in need.

Under this heading, while I mentioned greed, I thought I could add the fact that almost immediately scams popped up regarding the virus. Selling useless/fake products, including offers of cures and vaccines. Please check for the facts from a reliable source like the Centers for Disease Control (CDC)


3. "Down Playing the Seriousness" - If you aren't concerned about the virus at all, then I think you need to read more about it. It is new, which is why it is called "novel". A couple months ago, they knew nothing about the virus. As experts try to learn quickly, they offer the best practices from the data they have received. I have seen many posts about people overreacting for no reason, or the flu killing more people each year. This virus doesn't have a year's worth of data. As far as all the closures being an overreaction, I would say they are not. Italy is literally choosing which patients get to use the available medical equipment (like ventilators) and which ones die. The US response is meant to slow or stop the spread of the virus so that it does not overwhelm the medical system. The virus is deadly, and while you might be young and healthy with mild symptoms, you can still spread it to others for whom it may be life threatening. To these people, this is a very big deal!

As a side note, please know that even if the virus doesn't end up affecting millions of people does NOT mean it was no big deal! It does mean that all the actions taken (closing businesses/schools, social distancing, washing your hands, etc) DID work, and the disease was starved of hosts. We should be thankful for that and not smug that you were right.

You may have also seen ageism and ableism rear it's ugly head with subtle comments like "it only affects the elderly and sick" or the not so subtle use of the term "the boomer remover" to label the virus. Things like this story are sickening, but again clearly display the sinfulness of man. In the midst of all of this, I hope we can remember that each of us was created in the image of God. As image-bearers, my prayer would be that we might be able to trust Him for our needs; that His Word would bring comfort to our hearts; and His Spirit would prompt us to act in a loving manner towards one another.

Times like these make it clear that none of us are promised tomorrow. The Bible is clear that "today is the day of salvation." So, you should "choose today whom you will serve" and place your faith in Jesus Christ alone for salvation. Believe that Christ died for your sins and was risen to provide eternal life for all who believe. Repent of your sins. Whether you have toilet paper or not, you can trust that God is in control. Life won't be easy, and you might still feel fearful, but you can absolutely trust Jesus and God's Word, and rest in Him. (2 Corinthians 6:2; Joshua 24:14; Mark 1:15)


4. Final reminders - Please, brothers and sisters, check on your neighbors, and help where you can. One thing this whole situation has helped me to see is that I should try to keep a few extra pantry goods, so that when something like this happens we have plenty to share with our neighbors in need. What a beautiful testimony to the unsaved world to be a calm and shining light in times like this! Be safe everyone and together we will get through this.

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

Course Correction

I am not a sailor, although I did serve in the US Coast Guard Reserves. However, I do know that you need to be able to set a course and use a compass to stay on your heading. When you are on any kind of journey, it is important to know where you are going, and be able to follow directions to get there. Google tells me that being just 1 degree off course will cause you to miss your destination by 1 mile for every 60 miles you travel. Over the span of our lifetime, if we remain just 1 degree off course, the results could be disastrous!

Those of you who have followed my blog, know we have had a rough couple of years. (That may be a bit of an understatement!) My continuing health issues and physical needs have involved some large financial expenses. We recently experienced another unexpected financial setback. This week's experience has caused me to check my compass and realize that I had subtly and unintentionally drifted off course.

I dislike change, love to plan, like to be aware of what lies ahead, and feel more secure with a cushion in my savings account. Security is my love language! While none of these things is inherently wrong, it can be easy to get off course. I trust God, and know He provides all that we have. I know He has lovingly guided us through every difficult valley, and upheld us on every joyful mountain top. He alone gives, and He alone takes away.

So, when this unplanned financial issue came up a few days ago, it brought up a lot of thoughts and feelings. Fear, lack of security, frustration, and worry were quick to rear their ugly heads. I came to realize that my compass was no longer set to true north. My eyes were not fixed upon Christ, but were fixed upon my own plan to feel secure. My need to plan and control had failed me, and I sat wondering how easily I had drifted from my course (again).

Sitting atop my metaphorical boat, polishing it to a high gloss shine, I failed to make sure I was sailing a straight and sure course. I am thankful that God uses situations in our life to gently remind us to keep our eyes on the right thing: my Savior, Jesus Christ. It is not my planning, or savings account, or health that make me feel secure. Only in Christ is my future secure, and He alone is my only hope in life and death. I am very thankful for this little course correction this week, that I might avoid a more disastrous result down the road. I am in constant need of these reminders to keep my compass pointed north!

Have you checked your compass recently? Have you been drifting? Today is a great day to adjust your course, avoiding serious consequences, and place your faith in the One who can bring you safely to your destination.

Until Next Time~
Shari

What Kind of Friend Will I Be?

After a recent conversation with a dear friend of mine, I was left contemplating friendship. It has been a topic on my mind often the last couple of years, as I wondered what constitutes a good friend. The older I get, the more that definition has shifted for me. Several things have altered my thinking over the years. For starters, being married changed how, when, and why I formed and maintained friendships. It also changed the substance of them, since my husband really is my “best friend”.

As a small child, a friend was simply someone to play with. During grade school, friends were someone to talk to, to sit by in class, to have sleepovers with, and to pass notes to in class. By junior and senior high, the circle of close friends became a smaller, tight-knit group. They knew your secrets, your struggles, your crushes, and your likes and dislikes. You trusted them, sometimes with disastrous results.

I was pregnant by my 20th birthday. Being a wife and mother at such a young age probably shifted things for me quicker than most, but friends became a sounding board for life's struggles and demands. My friends were the people I spent hours a week talking to on the phone (before cell phones). We laughed and cried together. We shared special moments and hurtful situations.

At the age of 28, my husband and I became Christians at the same time my health struggles started. Friends became a source of encouragement on top of the above listed things, but over the past 20 years, as I have grown older and learned more about scripture, my definition of friendship has shifted yet again.

Let's take a look at some things the Bible says about friendship:

• "As God's chosen people.....forgive one another.....as the Lord forgave you." (Col 3:12-14)
• Jesus commands: "Love each other as I have loved you." (John 15:12-15)
• "As iron sharpens iron, so one person sharpens another." (Proverbs 27:17)
• A friend "loves at all times." (Proverbs 17:17)
• Only wound us in ways that are trustworthy. (i.e., tough love; Proverbs 27:6)
• Are more loyal than family at times (Proverbs 18:24)
• Provide mutual edification (Proverbs 27:17)
• Impart wisdom to one another (Proverbs 13:20)
• Friends may even sacrifice themselves for us (John 15:13)
• We should be compassionate, kind, humble, meek, patient, forgiving, living at peace with one another, loving, and thankful (Colossians 3:13-15)
• Friends also teach one another and worship God together (Colossians 3:16).

John 15:12-15 describes Jesus, the truest friend of all, "This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends. You are my friends if you do what I command you. No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you."

Friends love one another with sacrificial love. Friends know each other well and promote one another's welfare. Does this describe the type of friend I was or had when I was younger? No.

Frequently friendships were filled with petty arguments, envy, strife, fighting, selfishness, and gossip. Many of my friendships were "one-sided" where either I or the other person gave more and tried harder to keep the relationship going, not out of love and service but from a place of longing to be accepted.

Friendship has been on my mind the last couple of years for a few reasons. First, as my health gets worse and I struggle more to get out and do things, I have thought about how to nurture friendships while still taking care of myself. It seems more difficult to maintain that closeness when I have to cancel so many plans. Secondly, when we had to switch churches a couple of years ago, it was difficult to get plugged in at the new church. This is hampered again by health issues. I cannot be there every time the doors are open like we once were. I am no longer the "do-er" that signs up to serve, clean, help, or whatever all the time. Lastly, many people have talked to me about feeling disconnected at their churches, or not having friends and community at church. I began to ponder how we can all assemble at church week after week, and yet feel lonely. I questioned what I wanted out of a friendship. What did I expect from my friends? Did I give others the same things I felt that I wanted? How can we stop being lonely in a crowd of fellow believers?


Well, I am sorry to report that I don't have all the answers. I have been thinking about all of this for the last couple of years though, and thought I'd share what has been rattling around in my brain lately. I admit that not everyone struggles in the same way I do, so perhaps not all of this will ring true for you. Younger me craved acceptance and looked at friends as someone to please so that they would love me. Friendship was a form of idolatry, something I deeply wanted, expecting it to fill a dark whole in my life. As years passed and I slowly learned that friends let you down, can't be trusted with secrets, and turn against you in a heartbeat, I started to change my views. I convinced myself I didn't need people, and I selfishly started looking for friends to meet my needs, giving little in return.

As a young Christian, a couple of close, trustworthy friends emerged, but even then our conversations with often ungodly. Complaining and gossiping about people or church, focusing on the ways our husbands were failing, or whining about our children's misdeeds. Slowly conviction crept into my heart as I studied God's word more. Truly Proverbs 10:19 "When words are many, transgression is not lacking, but whoever restrains his lips is wise" was very true. Maybe spending hours on the phone with friends was unwise? Thus began the another shift for me.

More growth in this area and I struggled to find friends who would be an encouragement, find joy in God's Word together, call me out when I sinned, and who fit the description of the things on the list above. That is when God started to speak to my heart: I need to be that person! I should be looking for those attributes in myself, not others. I was still setting my expectations too high, and expecting others to meet my needs. I think that missed the whole point of friendship. Friendship starts with being that loyal friend that scripture speaks of. Do I encourage others? Have I lovingly called someone out on their sins or challenged them? Do I pray for them and with them? How can I expect others to be what I myself fail to be? Do I look to a friend to provide something that is fulfilled in Jesus, who loves perfectly, is faithful, and knows our needs?

I am no Bible scholar, but from what I know about scripture, it doesn't tell us to choose friends that will meet our needs, or be fun to hang out with. Friendship is not about us. It isn't about getting what we want or need. Friendship should flow out of the love we have for God into the lives of others. Our Christian walk is one of self-denial, love for others, and service. As popular culture likes to say "be the change you want to see." Friendship isn't just a choice we make consciously, as if we have the power in ourselves to love others, but really because God first loved us, His Spirit and love compel us to love others. God is love (1 John 4:7), and what better foundation to build a friendship upon than our unity in Christ!

My prayer for you and me as that God would keep working in our hearts to make us a friend like Jesus, one willing to lay down our lives for our friends. I think you will find as you start become this kind of friend to others, you will look up one day and realize you have a community of true friends around you, and these relationships will be healthy, godly and bring glory to our Lord!

Merry Christmas to you all! May we all be better friends in 2020!

~Until Next Time
Shari

Didn't See That Coming (or Hear It)

I spent several hours in Chicago yesterday at the Chicago Dizziness & Hearing Center. Dr Hain has been my doctor since 2008, when I first went to him with ringing in my ears and some mild hearing loss. I last went to him in 2013, and wrote about that too.

For newer readers of my blog, you may not realize that I am losing my hearing. I was diagnosed with autoimmune inner ear disease in 2008. I also have tinnitus (a constant, loud symphony of buzzing, humming and some indescribable sounds). Lately, I have had some dizzy spells so violent that I can't remain upright. I figured it was time to touch base with the doctor again. I have been focusing on the more pressing health issues, so this issue tends to take a backseat. Plus, I already know he recommended hearing aids last time, but they aren't cheap, and our insurance coverage for them is subpar.

I had 4 tests done, and then met with the doctor to discuss the results. As expected, my hearing has gotten worse. They are pushing a little harder for me to at least try some hearing aids. Hearing aids will definitely help me hear better, and can help with tuning out the tinnitus too. We will likely get those next year when we are able, when we replenish our medical fund. (I am one expensive disabled wife!)

The unexpected part of my trip yesterday was that one of the test results indicates that I have a small hole in one of the tiny bones in my inner ear. This is called "Superior Semicircular Canal Dehiscence" (SSCD), and of course, it is a rare disease. The test was abnormal enough that the doctor didn't feel like we needed a CT scan to confirm, since I have been through enough. Dr Hain explained that when it gets bad enough, surgery will be necessary. It may take 2 years or 10 years, but it will get worse. Surgery involves seeing a specialist at John Hopkins Medical Center, and drilling into my skull, so let's hope that it takes many years to get that bad. He says I will know it is time for the surgery when I can hear my eyes move back and forth, and it will sound so loud it will drive me crazy (something else to look forward to).

The hole is in one of the semicircular ducts. Both ears are affected.

I have such a great group of prayer warriors who are faithfully praying for me, so I wanted to update you, and ask for continued prayers. I have been listening to the MercyMe  song "Even If" on repeat the last few days. You should have a listen! God is able, and I know He can take this all away, but even if He doesn't, my hope is in Christ alone, and it is well with my soul. 💜

~Until Next Time
Shari

...and After

Mayo Clinic and Minnesota are in our rear-view mirror once again. We had a wonderfully scenic and relaxing trip up north to Canada from Duluth along the North Shore Scenic Drive. We enjoyed a lot of time outdoors, even though we had to bundle up, and I got stuck a couple times!

Minnesota was a tad colder than Chicagoland last weekend. I am thankful for the extra days Chad was able to take so that all of his vacation time this year wasn't spent just sitting at Mayo Clinic. It is great to have a little time to unplug, unwind and reconnect to each other (not just the internet); however, I am looking forward to getting home shortly, because there is no place on earth more comfortable. (and I miss my puppy 😭)

I repeated three of the nerve tests over the last two days and returned to the neurologist. The test results are basically the same as our visit 7 months ago, with one being marginally worse. We have decided to take a year off now and see if I stay stable or get worse. I will repeat these same tests again next fall, and compare the two years (one with meds, one without).

If I start getting worse this year we can always restart the infusions. Also, doctors at Mayo have developed a new blood test to check for certain markers in the blood for people with an inflammatory neuropathy (like me). If I have what they are looking for, we might have a different treatment to consider.

Anyways, our visit is over for now. I really appreciate all of the much needed prayers. I have some amazing, faithful friends 💜

I hope I explain things well enough. We know I have a form of CIDP, which is progressive, and will likely get worse with time. It is a rare disease so there isn't a ton of info on it, but my doctor and his father are the leading experts.

So, keep praying, but also know that we are holding steady on the current course, and not expecting earth-shattering news or treatment options that will "cure" me. Please pray for pain control, wisdom, and even healing, if God so wills, but know that my trips to Mayo are not a search for a cure or diagnosis. We are trusting God's good, pleasing, and perfect will in each of these trials, and taking one day at a time.

Thanks for following along on my journey with me!

~Until Next Time
Shari