Just One Click

 Sometimes it only takes one click to take you back. Most days I don't think about it, but it most definitely impacts my life daily. It shaped who I am, what I do, and how I respond to both people and situations. Just one click on a documentary that was recommended for me got me thinking, and then blogging. Leave No Trace is a documentary about the Boy Scouts and their downfall as stories and documents were brought to light about ten of thousands of boys who were sexually abused in the scouts program and camps. 

In my last post, I talked about being bullied and how that made me an angry teen, but I didn't touch on this other reason for that anger. The specific incident this documentary made me think of happened shortly after my 13th birthday. My mother had always told me stories of my sister being a candy striper at our local hospital, and I really wanted to do it also. I lived about 3 blocks from Mercy Center in Aurora, and walked over to ask questions about it. I learned you had to be 13 to volunteer, and they no longer called them candy stripers. On my 13th birthday, in May 1983, I walked over to Mercy Center again and signed up to be a volunteer. I started off delivering flowers to patients the very next day. I had no friends, so I had a lot of time that summer. Within a few days, I was given more hours and duties. I started working at 6 am each weekday in the admitting office. 

In 1983, the hospital had no computers, so there were piles of paper charts and a huge white board with every bed number in the 5 story building. We had to keep track of each patient coming in and going out. I would get them to complete paperwork, give them a wrist band, assign them a bed, and walk them up to their room. I LOVED this job and must have excelled, because after a couple of weeks, the manager was letting me come in alone on Saturday mornings to check in the rare patient who had a weekend admission. 

In the course of my duties, I had a lot of contact with the nursing station and environmental services to make sure beds were empty and clean. I will spare you the horrid details, but the first week of August that summer, less than 8 weeks from when I started, I was standing in the volunteer coordinator's office being fired. I was sobbing and begging, but she was adamant. As I stood there very upset, weeping and shaking, she explained that a nurse had reported me being in a utility closet with a (30 year old) janitor. She raised her voice to shame me for being young and not understanding that people had jobs to do, and I was an unhelpful distraction. Yes, you may have guessed, I wasn't in that closet looking for supplies. I often wondered how that nurse and supervisor were able to turn a blind eye to something so heinous, but by then, I had already learned how to keep silent and had no self worth.

To be honest, sometimes I wonder if I had a sign on my forehead. I am not joking. I was sexually abused by 5 different adults by the time I was 18. As a teen I was also an easy target for the boys in my age bracket. "Date rape" wasn't a term I heard in the 80's, but I definitely understand what it is and how it happens....at least for me. I was really unable to say "no". I had learned that I didn't have a voice or a choice. I deserved what I got, or at least that is what I thought. I rationalized that if I wouldn't have been there, it wouldn't have happened, so there is no one to blame but myself.

As you might guess, I dealt with depression and anxiety, but I was also angry at the world around me. I really was broken. As broken as a person can be anyways. I had trouble making real friendships and had no sense of "self". My past continues to impact my present, although less than it once did. I still keep people at a distance, have trouble trusting people, and I may never have a truly healthy view of sex, but having a wonderful, patient and understanding husband has absolutely been great medicine!

The two of us dealt with my past when we went to counseling in the mid 1990's, and shortly after that is when we came to Christ. People like to present Christianity as a "cure all". The message that frequently gets communicated either directly or indirectly is, "Trust Jesus and you will be happy and healthy." If you know anything about my life or have read this blog, you will know I am not healthy physically and have struggled with mental health in my life as well, so that clearly isn't a true picture of Christianity.

God's word doesn't promise us health or wealth, at least not the earthly defined type. He does tell us that He is with those who love Him. He comforts us, petitions God the Father on our behalf, gives us His Spirit to guide and strengthen us, and leaves us his Word to give us peace. Christ knows my pain. He shares in our sufferings. He suffered unimaginable pain while hanging on a cross, dying, bearing the weight of my sin. He took my place then, so that I might have life everlasting. On that day, I will know what true health and wealth is. Between now and then, I will keep clinging to my Savior, trusting Him to continue to heal my heart. He is teaching me to love and forgive others as He loves and forgives me. If you haven't trusted Christ, asked Him to forgive you, and placed your faith in him, my friend, please cry out to Him today. He won't take away all the pain instantly, but He will see you through it. 

The early years of my life were marked by trauma, grief and loss. The later years have been marked by grace, healing, and restoration. Praise be to God!


Until Next Time~

Shari

P.S. In case you missed the posts about my childhood and early adulthood.

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!

Think Zebras

 February 28 (or February 29 in a leap year) is Rare Disease Day. It began in 2008, and this year more than 100 countries are participating in this day set aside to raise awareness for those diagnosed with a rare disease. In the United States, a disease that affects fewer than 200,000 people is considered a rare disease. There are estimated to be between 7,000 - 10,000 known rare diseases, only a few of which have any available treatment. More than 30 million people in the US, and 300 million worldwide are living with a rare disease.

It costs more than $300 million on average to bring a drug to market. The government helps produce what are called "orphan drugs," which are medications for rare diseases that would not be profitable for companies to make due to limited number of patients who would need them. More research and support are needed, and that is why it is important to raise awareness for rare diseases. 

This year, I thought I'd share a little about my story (again). I can't speak for everyone who is living with a rare disease, but one of the most common things I see in this community is how long it takes to get a diagnosis. The average time for a rare disease patient to receive an accurate diagnosis is more than 7 years! There is a saying in medicine that "when you hear hooves, you should think of horses, not zebras." This is supposed to remind doctors that most often when you have a set of particular symptoms, it is most likely caused by something common (horses) and not dig through medical books for some rare diagnosis (a zebra). They should consider and eliminate the most likely diagnoses first. The zebra is the symbol for Rare Disease Day. We are the exception to that rule.

Rare diseases aren't all that rare when you consider that 1 in 10 Americans is living with a rare diagnosis. Doctors frequently overlook a rare cause for patients' symptoms. I had an experience shared by many in the rare disease community. When my x-rays did not confirm my doctor's theory that I had a herniated disc (which is the most common reason for leg weakness with numbness), he told me that I should see a psychiatrist. When the results weren't what he expected, he blamed my mental health rather than seek other answers. 

Going through years of doctor appointments and health struggles before finding an answer is exhausting. Friends and family that started off helping with things disappear one by one as the months and years pass with no answers. Some people doubt you, and you often start to doubt yourself. For others, life progresses and you can't keep up. It can be isolating and depressing to feel unwell and have doctors dismiss you. You learn quickly to do medical research and become an advocate for yourself, but also have to balance going to a new doctor "too prepared." Doctors who see you walk in with a stack of records and list of previously seen specialists are more likely to see you as a difficult patient. 

Many times, rare disease patients have more than one diagnosis, with overlapping symptoms, and that clouds the picture further. We quickly discover that there is no magic bullet that will fix everything. Most rare diseases do not have a cure, and while symptoms can be managed sometimes, the treatment often comes with side effects and at a hefty expense. Having a rare disease and/or disability is expensive. Travel to specialists, new medications, testing, treatment, and mobility equipment can bankrupt a person. Sadly, if you are lower income, or have no/poor health insurance coverage, you may not even have access to many of the doctors or treatments that might help.

My rare disease is called CIDP (Chronic Inflammatory Demyelinating Polyradiculopathy). It is an autoimmune disease. That means my immune system sees my nerves as something harmful, and mounts a defense, thinking it is protecting me from a foreign invader, but instead it destroys the coating on my nerves. The available treatment options have not helped me, and they consider it to be "treatment resistant" at this point. There really isn't anything else they can do but let the disease run its course, monitor me, and give me medications to treat the symptoms. 

I first had symptoms of CIDP in 2004. I received the wrong diagnosis in 2009, and got the correct diagnosis in 2013, which was confirmed at Mayo in 2018 (which is when we found out the 2009 diagnosis was wrong).  You can read more about that devastating news here and here. This disease causes numbness, weakness, nerve pain and balance issues among other things, and has been slowly taking away my ability to walk.

I won't repeat my whole history here, but if you haven't read the beginning of my story yet, you can do so here. In 1998, I went from being healthy and active to fairly unwell, which also took a while to diagnose. They named it many things before deciding on calling it Undifferentiated Spondyloarthropathy, which is a long way of saying I have an autoimmune arthritis that mostly effects my spine, hips and shoulders, and is of unknown origin. This disease has slowly worn away my spine, causing many herniated discs, bone spurs, loss of motion, and pain...SO MUCH PAIN. 

The dual diagnosis is a lot to deal with, but also why Rare Disease Day is important to me. I hope for new treatment options. I would like to raise awareness so you can help someone you may know that is going through something similar. I have lost the physical ability to do many things I loved. I have had to cancel many plans, miss out on activities and events, and have also lost friends. If you take anything away from this post about Rare Disease Day, I hope you can better understand how to support a friend or family member with a rare disease.

• Be ready and available to LISTEN! Don't try to tell them you know exactly what they are going through because you had a headache last week, or broke your ankle when you were a child and had to use a wheelchair for a week. The older I get, the more fully convinced I am that we can never fully know what someone else is going through, because we are all so very different. 
• Along those same lines, as much as you want to, please don't offer medical advice or try to fix the problem. I can't even tell you how many times someone has told me about a vitamin or medication that I should try because it helped their Aunt Betty with knee pain. Seriously, it is unlikely that you can offer your friend information that they or their doctors are not already aware of. Offering unsolicited medical advice says to your friend that you know more about their rare disease and medical history than they do (trust me, you don't). 
• ASK how you can help! It's great if you love doing laundry or mowing the lawn, but instead of offering to do what you like doing, ask them what would be the most helpful for them. Maybe laundry isn't a struggle for them, but getting out to the grocery store is. Don't force your help on them either, but gently remind them of your willingness. When they need you and are ready to accept help, they will call upon you.
• Try to include your friend in things. Again, just ask! Maybe holding the event at their home would be easier for them, or offering them a ride, being willing to leave early if they aren't feeling well. Don't push, but be aware that there are many factors that can make us feel isolated, and many can be overcome with a little willingness and creative thinking.
• Don't assume because someone looks fine or is smiling, that everything is okay. This is true in situations other than rare diseases! We are great at hiding our pain, but sometimes having a friend who will ask and listen, is just what we need 💜 It can often seem like we talk too much about our illness and pain, and yet it envelops every aspect of our lives and we need to feel free to discuss it with those closest to us. I don't talk about it to whine or complain, but simply because it can be so overwhelming.
• Be flexible! Be willing to change plans, or as we like to say "adapt, improvise and overcome." It is hard to know how you will feel a week from Tuesday, and therefore we sometimes avoid making plans rather than canceling. I truly appreciate friends who say "text me that morning and let me know if you feel up to meeting, or we will pick another day." I feel loved and cared for, and makes me feel less guilty knowing that I haven't let them down.

Hopefully there is some helpful information here. Have a great Rare Disease Day today!

Additional information about rare diseases here and here.

#zebrastrong 

Until Nest Time~

Shari

Daily Absence

 Imagine that your elderly mother's birthday is coming up in a couple of weeks and you have the bright idea to plan a surprise birthday party for her. Within minutes, your brain is whirring with to-do lists and plans. You sit down the first chance you get and make a list of guests. Over the next few days you are super busy as you begin squeezing in the party planning along with all your regular activities. You realize you haven't talked to your mom in several days, which is unusual, but you brush that guilt aside because you are busy. You are SO excited and it will be great to spend the day with her on her birthday-- besides you are horrible at keeping a secret and don't want to say anything to ruin the surprise.

Two weeks fly right by and the house is decorated to perfection. Guests start to arrive, and you feel nervous butterflies in your stomach because you want so badly to please your mom and make this day a success. As people start to mingle, you just can't shake the feeling that you forgot something, and it starts to gnaw at you. Within a couple of minutes you realize what the problem is...you forgot to invite your mother. 

The guest of honor isn't there! Embarrassed and guilty, you make excuses and justify how busy you were. Surely you aren't the only one who would have done all of this and forgotten the most important thing. The guests are having a great time. You notice the cheese platter is empty, and before you think about it again, you are back to being a good hostess. As the party winds down, people trickle out and you start the process of cleaning up the party aftermath so you can be ready to get to work tomorrow morning. Just before you head to bed, you call your mom to say "Happy birthday! I love you. Talk to you later. I am very tired. I had a busy day," and hang up the phone just before you drift off to sleep.

Does this all sound ridiculous? Impossible even? I would hope so, yet I fear many of us live our lives just like this when it comes to God. I heard the term "Functional Atheism" many years ago, and it has always stuck in my head. We live busy, independent lives. We go through our day with very little (if any) thought of God, His Word, or prayer. We get things done, run around completing our to-do lists, serving others in God's name, and yet fail to actually include the guest of honor in any of our plans. Basically, we live functionally as though we are atheists, simply planning and doing the tasks we need to do.

Oftentimes I lift my head from a project I have been engrossed in, maybe even frustrated with, and realize that I haven't bothered to pray and ask God for wisdom. In fact, I never even bothered to ask if the task is something I should be doing at all. I lay down to sleep at night, and the thought pops into my head that I should pray, because I "forgot" again today, or didn't have time, only to wake up in the morning and have only a brief memory of a few sentences uttered before I was sound asleep.   When this happens do I spend my morning in prayer? No, to my own shame I do not, but instead I get up and hit the ground running. After all, the dog needs to go out and I am hungry and there is a lot on my to-do list today!

We tend to be driven to God in prayer when bad things happen, and our daily lives are disrupted. The war in Ukraine has been that driver for me the last few days, as reading stories from the people there and seeing the devastation has reminded me how much we need God to intervene. I started to think about those words again: Functional Atheism. Why do I struggle so to be faithful in prayer? God forgive me! I am utterly and completely dependent upon Him for life, light, faith, breath, and, well, EVERYTHING! Yet I continue to rush ahead in my own strength to do all the "good things" I think I should be doing, and all the busy days just keep flying by. May we all be more fully aware of our need for Him. May He graciously increase our desire to spend time with Him, causing us to trust Him more fully.

Until Next Time~

Shari

Off To A (Not So) Great Start

 Many of you have mentioned that I haven't blogged in a long while. Honestly, sometimes events or thoughts spur a blog post, and I can't sleep until I get it down on paper. Other times, many months or longer fly by, and I don't have much to say (hard to believe, I know). The truth is that lately I haven't felt well enough to do much of anything except that which is essential for daily living. 

It has definitely been a rough couple of months. I had a cold just before Thanksgiving, and got better just in time to have my second bout of covid the first week of December. I am thankful it was mostly like a mild flu, and MUCH easier than the first round in October 2020. I felt pretty much back to my "normal" by mid-December. I got back to regular activities and enjoyed the holidays with family. Our daughter was exposed to covid, and tested positive a few days after New Year's Eve. I started getting sick again a couple days after exposure, but tested negative. I had all the symptoms, and the doctor said to assume I had the Omicron variant based on my symptoms and exposure.

I had mild cold/flu symptoms for less than a week, but with some lasting congestion. I was mostly okay by January 8th, but only for about 7 or 8 days. Things went back downhill as I continued to battle congestion, sinus headache, overwhelming fatigue, dizziness, and other cold symptoms. I just really wasn't getting better, so I finally saw the doctor this past week. She thinks it is likely "lingering covid" symptoms which can persist for 12-16 weeks!! I started antibiotics a few days ago, and a steroid pack today, and am feeling completely miserable. (I am so thankful I bought a case of tissues a few months ago, because I have needed them)

I don't usually lounge around, even on bad days, but lately I haven't had much choice. It has been an extended time of reading, praying and napping (some whining about how bad I feel too). I actually have a hard time doing "nothing", so even when I feel sick, I usually make dinner and keep up with housework. 

I feel like this past year has been like 60 grit sandpaper, sanding down the rough spots and making me more aware of my weakness and sin, and my utter need for my Savior! No one likes to walk through the valleys, but how much more does the grace of God shine through when there is nothing else we can cling to but Christ!

It is easy to feel weary and frustrated when things like this are added upon my normal health struggles. It takes deliberate and intentional steps to stay in the Word and prayer. God promises us that He will never leave us or forsake us (Hebrews 13:5), but that doesn't mean Satan wouldn't love to get us wallowing in self-pity. So, I will try to enjoy this extended time of rest, and remember God's promises. We truly have SO much to be grateful for, especially our Savior.

Until Next Time~

Shari