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

Opening A Can of Worms

I have hesitated writing about this particular subject, but now that I am a couple years out from the event, and with my current observations, I decided it was time. An alternative title might be "Grace and Education" since that is my hope....to educate, but also to extend grace to myself and others as we learn.

I have frequently pointed out issues to my friends that I have experienced as my disability has progressed. One example would be my disdain of the step-on garbage cans in handicapped bathrooms. HOW is someone in a wheelchair (or with no balance, no legs, or whatever) supposed to step on the foot pedal and open the garbage can to toss out the paper towels??? There are dozens of things like this that I have figured out as I go. I put these items in the category of "you don't know until you know". Nobody has a reason to think through all the scenarios that could arise, nor would we be able to think of ALL the possible differences, before we plan, design, or implement an idea. But, for the one person for whom the problem exists, it is a trouble spot. I run into these dilemmas many times a day.

I have tried to remember to extend grace to others, because I do know people want to help. People have generally responded well when I point out problem areas (although most of them don't change when I visit the location again). I am not a dogmatic disability activist, but I would like to lovingly help others to think through things they don't know until they know.

One of the things I have noticed as my disability has become more visible, is the look of pity that I get. I am sure most people don't even know they are doing it, but it is obvious when you're on the receiving end. Recently, I have ventured out alone to some stores, now that I have a van and am a little more independent. Times like these are when I notice the pity look the most. People rush over to hold doors, clear aisles, and the like, all while their face (and sometimes even their mouths) say "awww, poor thing." I am stubbornly independent, but I am also in pain, and starting to have trouble with my arm and hand strength so, in many ways, I am just thankful someone opened the door, or cleared the path, so I didn't have to struggle so much. However, there are many (perhaps even the majority) of people with a disability who are strong, capable, and independent. We do not need or want your pity, even when we could use your help. If I can turn this post into a learning experience, then the first lesson is that you should ask someone if they would like help. You wouldn't rush over to a able-bodied person, and grab the door out of their hand to open it the rest of the way, so don't do it to a person with a disability.

Basically, just treat all people the same. Easy peasy! Okay, not really. Everything we do is tainted by sin. Even our best efforts to help others are mixed with wrong motives. Many times I get the "pity look" as someone opens the door for me, and it is quickly followed by this look (or sometimes an explanation to a child) that says "I am so awesome for helping the poor, crippled woman." I try not to be oversensitive, or read things into a situation that aren't there. The truth is my response is tainted by that same sin nature. This all reminds me of an article I posted on FB a few years ago about "volun-tourism". We travel to a third world country, hug some orphans, hand out water and candy, build a home, and go on safari. It was pointing out our tendency to use a missions trip as a photo op. We go back home a week later with great photos and feeling good about ourselves for "helping those poor people". I have done this too, but we quickly go right back to our American life of excess, and the other people we just thought we "helped" have not had any actual change in circumstances.

(More useful tips and disability etiquette links are listed below. In addition, I added some info about the trend in volun-tourism, since they explain the issue much better than I do. Please take a few minutes and browse some of the highlights!)

This segue brings me to the story I haven't talked about. A few years ago, my husband and I attended a camp aimed at families who have a member with special needs. In a lot of ways, we probably went there with the volun-tourism mentality. We were going to go serve the families struggling with the pressures of dealing with special needs. We learned a lot about disability etiquette there for the first time. As a person with a disability, I was overwhelmed seeing families embraced, loved, and served by many volunteers. I wrote about my experience, and my growing pains, as God revealed ugly truths in my own heart. It was painful, and wonderful, all at the same time. This was also a week of learning to extend grace. If you know me, you know my middle name is Organization. Dealing with a dis-ability is not as hard for me as dealing with dis-organization. That old post shows how I struggled to find a spot to serve, or to help without making it about me. By the end of that week, I felt I had found my niche, and for the first time felt that I could be useful despite my disability. And then....

A year later we signed up to serve again, but we would end up never going back. Turns out that even an organization built on serving families with disability has trouble doing the one thing they talk about a lot: co-laboring. They are absolutely wonderful at making families feel loved and welcomed. Many of these families think this camp is the best week of the year, and we need more places like this! The trouble is that there is still a disconnect when it comes to the able-bodied people helping dis-abled people (or differently-abled, if you prefer).

Like any week of service or missions, we show up expecting to help and bless the less fortunate. Even if we don't want to think or talk about it, it shows in our faces, actions, words. When we went to sign back up to serve again at this camp, there were issues, many that I will not discuss publicly, but the one I will talk about is the fact that they asked me to return as a camper, not a volunteer. It was brought up that we could come as a family and be served, and relax for the week.

While this was super heartbreaking for me, because it was the one place I actually felt useful, but I don't bring this story up for that reason. I want to talk more about our tendency as humans to help others to feel good about ourselves, instead of helping people who need/want our help. It is not wrong to open a door for someone, but honestly, do you do that for everyone, or deep down do you think the person with a disability needs you to do it? Basically, I am asking you to truthfully evaluate if you treat people the same. This requires some soul searching and brutal honesty with yourself. I would venture to say that we all do this very thing. Whether it is physical, or intellectual, there are areas in our lives that we feel superior, even if that is not a thing we would say to someone. We have those moments of thinking we could do something faster, or figure something out better, than someone else.

What it boils down to actually, is the fact that we all need to be more aware of our motives, our sin, and remember that we all have strengths and weaknesses, but none of us wants someone else rushing over to "fix" our problem. We can come together, find a place where we can work shoulder to shoulder, utilizing each other's God-given strengths, and do so to the glory of God.

Missions and service projects are fantastic, and I am not trying to say to not do them. My point is more about really learning to co-labor, whether it is in the disabled community, or a village in Africa. Ask how or what you can do to help, and roll up your sleeves, side-by-side with the others, and work together. I want you to serve, but I mostly want you to understand that a week at a camp may not be the best way. Only you can prayerfully decide how and where to spend your time and gifts, but be intentional and educate yourselves before you do.

I am thinking of the old saying:

Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime.

In order to truly do that though, you have to be willing to talk and listen. Find the areas in an individual's life where they could use your giftings, and show up. Opening a door for me at Kohl's might be just fine, but maybe what I really need is help with shopping. A meal might be great, but I may have a refrigerator full of food, and a dozen loads of dirty laundry. This type of service and love involves more. More knowledge, more love, more dying to your own interests, and looking more to the interest of others. It is not about feeling good about yourself, but about laying your life down in service to another. This all takes lots of grace, love, and forgiveness. It also takes time to educate yourselves. (Please check out some of the resources listed below)

I will finish with these words from Philippians 2:1-8:

"So if there is any encouragement in Christ, any comfort from love, any participation in the Spirit, any affection and sympathy, complete my joy by being of the same mind, having the same love, being in full accord and of one mind. Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men.   And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross."

Until Next Time~
Shari


Resources:

Disability-

1. "Interacting With People With Disabilities"
2.  Etiquette and Language Tips
3. "Introduction to Disability Etiquette" 

Volun-tourism-

1. "The Reality of Voluntourism"
2. "The Business of Voluntourism"
3. "As Voluntourism Explodes In Popularity, Who Is It Helping The Most?"

(Please note this links are to outside resources, and all the information/views are not mine, but are provided here to educate you more on this topics.)

I Was Only Trying To Help

We all know the feeling we have when a dear friend, or beloved family member is hurting, sick, depressed, or grieving. We feel helpless. We want to do something to help. In some ways, we need to do somethings tangible to feel useful, and let them know we love them. I understand this need. I am a "fixer" of problems. A trait perhaps most often considered a "man thing" to do. Over the years, I have learned to become a better listener, without listing out the steps to fix the problem (as I see it). I still find this difficult at times, as my mind works in a logical and sequential manner. I enjoy solving puzzles. When I hear a hurting friend say they are struggling, or they have a problem, I immediately think "well, let's fix the problem, then you can be happier, and in turn that makes me feel good to be useful."

I also have had moments when I am sharing my struggles with someone, and they pounce on me with a list things I can do to fix the problem. Over the years, people have bought me vitamins and supplements (or try to sell their brand to me). Given me medical or cook books. Sent me a mile high stack of articles and emails regarding treatment ideas or research. I am also learning something being on the other side of the "fixer." I am learning grace. To be very honest, my first response is irritation at times. I question why people would think I have not considered any of the options they are suggesting. I am a researcher by nature, and have read books, articles, blog posts, and many medical journals looking for answers over the years. I do eat a diet I feel is healthy for me. Perhaps the worst is my response to my several friends who sell the products they believe in, and have worked for them, when I think "No I don't want to buy product x, or I would have bought it." I feel guilty when people spend money to buy books and supplements, when I know that I will likely toss them. I have learned that people need to feel useful and they show love by trying to help fix the problem, just like I am guilty of doing.

One of the problems with being a "fixer" is that it is a way to make ourselves feel better. We feel the need to help, so we do, but in a way we think might be helpful instead of finding out what would actually be helpful to the individual suffering. I have come to understand that feeling of helplessness. I know that I have so many wonderful friends who care, and truly want to help me. They hurt because I hurt. I have to be gracious in my response to their offer of help, and hopefully they will be gracious in return if I seem to not take their advice. (Let me just take a minute here to ask forgiveness to those I have turned away with an unkind word. I am sorry. I am learning to think before I speak, but I am a sinner. I love you all, and would not want to hurt you, and I know you have a concern for me at the root of your offer.)

You all know how I love an analogy, although sometimes I have trouble thinking of a truly effective image, but I am going to try! I am sure you have been in a grocery store when you realize you are in the way of another shopper. You swerve to be considerate, thinking you will give preference to the other person, and patiently wait. But then, just as you swerve, so does the other shopper! You are both trying to do the "right" thing by helping the other person, but in the process you both have gotten in each other's way again! I have had this happen numerous times, and occasionally we have both then corrected our swerves and again ended up in the way. This situation is uncomfortable, and frequently ends in a nervous smile and one person saying "you go ahead, I won't move."

There is absolutely nothing wrong with wanting to help someone else, but perhaps we should take a minute to listen and identify how we can really be of use. For me, I would prefer someone just say "how can I help?" If I need a ride, or someone to grab a prescription, or mail a package for me, I will ask those whom have offered to help in the ways I need. Some people may not have a tangible way that they need help, maybe a kind word or card, and a listening ear without judgment, is the best "fix" you can give them. Prayer is always a wonderful gift! When we serve others the way they want to be served, instead of in the way we want to serve them, we avoid the nervous smile. We walk together, instead of one of us stepping aside, and telling the other one to go ahead and pass by.

Hopefully, you understand that I am not upset with anyone, I am just trying to say that we could all do a better job of helping the hurting in a way they want/need to be helped, instead of a way that we think will solve the problem. The truth is there are not many things I haven't tried (at least for a time) and the only thing remotely useful thus far has been dietary changes. I lost weight, lowered my cholesterol and blood pressure, but I also continued to worsen with the neurological disease, so clearly it is not a cure-all. I am thankful that your aunt's neighbor, or your cousin's best friend tried a certain diet/vitamin/doctor and got much better. I really am glad to hear that, but I also know that all our bodies are very different, our diagnoses are not the same, and a "one size fits all" approach does not work. When people ask about my dietary changes I tell them, but I do say "it worked for me, but I doubt it will work for everyone." This may be a whole different post, but just the fact they call it "practicing medicine" gives us a glimpse into the difficulty of how different people's bodies respond differently to the same health issue. This is why you can have many people with a herniated disc, and have them all have different outcomes. One gets better, or maybe never has any pain. One needs some therapy, a steroid injection and takes a few months to feel better. Another may need surgery or may be permanently disabled. Doctors tell me half the population would have a herniated disc show up on an MRI, but most never know it because they feel no pain! I am sure you can begin to see the difficulties with treating every person with the same plan!

At the end of the day, hopefully we can all learn to love less selfishly, pray more diligently, and extend grace more consistently, growing more and more each day to reflect Jesus in our lives. I love you all, and am so thankful for your prayers! 💜

Until Next Time~
Shari

Onward and Upward!

If you haven't already heard, I have decided to stop treatment, and let the disease progress naturally. I saw the doctor today, and he was in agreement due to the level of side effects I experienced this time. He did say we could try again in the future, if things take a sudden turn for the worst, and I feel it is worth the risks.

This choice is not:

 Que sera, sera;

 whatever will be, will be; 

the future's not ours to see.

Que sera, sera

This is a willful submission to the will of God. I am not throwing up my hands and saying "I give up" or "I don't care what happens", because I do care. A lot!

What I am saying is that the future is not mine to see. I do not need to worry and fret. My future has been settled, since the foundations of the world (Ephesians 1:4), I am not in control. I cannot know or change what the future holds, but I choose to trust. I trust that God, who has numbered my days and the hairs on my head, and has my name tattooed on His hand, is faithful to strengthen me for the future He has planned for me. I find peace in knowing that God knows me by Name. He knows what I need and provides for those needs.

I pray that I would be faithful in my suffering. That I might hold fast. That He would help me to number my days and consider my days (Psalm 90). That He would help me keep my eyes upon Christ, and not my circumstances. That He would allow me to use every day that He grants me for His glory. I know that whatever comes my way will be used for my good.

My prayer for us both is that we would serve Him faithfully whether that is done from a standing position, from a wheelchair, or even from a bed.

To God be the glory! Regardless of what happens to my physical body, I find peace in knowing that it is well with my soul! I hope it is well with yours too, my friends. <3

Until Next Time
~Shari

P.S. The onward part of my title is covered in the above post. The upward part is regarding the elevator (pun intended) :) Mike, Mike, and Mike from HMS in Downers Grove (and yes, that is really the construction team's names!), came for the final consultation on Friday afternoon. We are waiting on the written quote, but really like their company and all 3 Mikes were great. Bar unforeseen circumstances, we should sign with them to get the architect going on a plan, and break ground (literally) shortly after the first of the year. I have applied for a grant that could provide up to $5,000. Please pray this is approved. I have raised just over $1,000 on my donation site. Well, on our way to covering the $60,000+ cost! Thank you all for your generosity!!

The Good, The Bad, and The Ugly

As 2016 draws to a close and Thanksgiving is fresh in my memory, I am reflecting on how God has been working in my life, and the lives of my family, and friends. I have developed new and deeper friendships. I am surrounded by family and friends that have gone above and beyond. God's presence and peace have been made tangible to me through the love of those around me. I am so thankful to have such an amazing group of people willing to serve and encourage me.

I wanted to give a quick update on how things have been going.

The Good:
I am finished with the Rituximab (chemotherapy drug infusions). Since there has been some confusion, I just want to be clear that I do not have cancer. The doctors think the neuromuscular disease is an autoimmune disease. In autoimmune diseases, your immune system kicks into overdrive to attack a body system that is not harmful. In my case, I have 2 different autoimmune diseases. This new one is attacking my nerves, the older one is attacking the connective tissue in my body. Normally, your immune system should fight hard to overcome a virus or bacteria, but not substances, like your own body or pet dander, that are harmless. I have been doing the chemo in hopes that it would lower my immune system enough to stop it from working so hard. If they can get it weak enough, the theory is that the disease will be stopped or slowed. Unfortunately, with a very weakened immune system, I am more susceptible to catching illnesses.

The Bad:
I was supposed to go for one more infusion in December, but the doctor decided that since I am not noticing any improvement, we should not continue. There is still a possibility that it "helped" in the sense that it may have slowed the progression of the disease, as I have only gotten a little worse since July. The medication will keep my immune system at a lowered level for about 6 months. I may notice a sudden worsening as we approach that mark, and realize that the infusions did help, and I will have to start again. (wait, so is this good or bad, hmmm??)

The Ugly:
Where do I begin? This year has been quite difficult physically, emotionally and even logistically. There have been a LOT of tears!  Daily pain, increased weakness, and difficulty doing all the things I used to do, has become a very slow process of coming to terms with my current reality. Learning to let go of some things, rethinking how to do other things. I am still learning to ask for help, and admit when I can't do something. Sometimes I feel like a shell of my former self. It is hard to recognize myself sometimes; depression, anxiety, isolation are all new to me. I am also struggling to deal with the lack of sleep (due to pain and cramping) and the need for pain meds (I hate taking any of them).

Last week I went to be fitted for a wheelchair. It was much more emotionally overwhelming than I expected. I had no clue there would be so many options to choose! It is VERY difficult to feel as though you are losing your independence. I am thankful for so many wonderful people in my life who are willing to help in various ways, but it is hard to admit you need their help. It is extremely humbling, and difficult to put into words if you haven't lived through it yourself. My husband (and a few friends) would say "stop being stubborn and let us do things for you," but to admit I can no longer do a task (especially one I enjoy doing) is not just a logical choice, it's an emotional one. Would it be easier for Chad to do the laundry or grocery shopping? Yes, of course, but I like taking care of my home and family. Frequently, I think it is worth pushing myself and then needing a nap or having to rest for a couple of days.

Sometimes it all just seems so overwhelming. Some days I wonder how I will get out of bed and actually be productive. Other days, as I see God at work molding me, sanding off the rough spots and drawing me closer to Him, my response is gratitude and joy. This holiday season I am thankful for the grace and peace of God; for His strength that sustains me, and for each and every one of YOU that He has brought into my life. You all help me in more ways that you can possibly know! Thank you all for your prayers, help and love. Thank you for being wonderful examples of Christ's love to me, as you lay your life down in service to Him. I am grateful for all the cards, the calls, the flowers, the texts, and rides. Thank you especially for your prayers and patience as I figure out my place and new level of ability. I love each of you! <3

If you are hurting, lonely, or struggling to get through each day, know you are not alone. When you find yourself in a dark place, a place of pain and uncertainty, reach out to a friend. More importantly, I pray that you might be able to lift your eyes up to the heavens, and cry out to God. He alone is the strength and salvation for all who call upon His Name.

Don't DIS me!

I am disabled. DIS-abled. It is probably not politically correct to call a person disabled. I think the preferred term might be "person with a disability." I have never been one to get easily offended or get caught up in semantics. I am DIS-abled. What does that mean, you ask? Well, let me try to explain my experience.

If you are a lawyer and get DIS-barred, you can no longer practice law.
If you show up to a party, and then DIS-appear, you are no longer at the party.
I was abled. Now I am DIS-abled. I can no longer do a lot of the things we used to do. If you have been following my journey, you know that I was very active and fiercely independent. I have had some health issues that caused pain and slowed me down since 1998, but it wasn't until they removed the nerve tumor in September 2009, and I lost partial use of my left leg, that I truly felt disabled.

Now you have probably all seen the Facebook posts of me climbing rock walls one-legged, or kayaking, or riding my adaptive trike, or finishing the Tough Mudder. I have pushed myself. I have tried "to adapt, improvise and overcome" as they say. What you can't see is the inner struggle. That fiercely independent woman who stills screams at me to get up and go, but quickly realizes her body hates her and isn't willing to move. You don't see the pain that comes after I push myself. Those closest to me are familiar with the constant cycle of me doing too much, and then needing days to recover.

Coming to grips with this new neurological disease, that is slowly causing me to be more disabled, is a slow and painful journey. I walk with a cane for balance now, although I should probably use a walker to be safer, and can't do long walks at all anymore. I am in almost constant pain. I don't sleep well because of the nerve pain burning down my legs, and there is the muscle cramps and twitching that contort my legs and feet into very painful positions and won't let go. This is all difficult. Harder than I imagined, and just when I think I am making progress in accepting this new reality, life smacks me in the face and reminds me how hard it all is; how much I am missing out on.

My recent struggle to push myself, or Chad would call it my stubbornness, keeps me going to the grocery store each week. I can no longer push a cart and walk around, so I have to ride in one of the motorized carts. I can only go to places now that offer the perk of a motorized carts to their customers. Without this feature, I would be unable to go shopping at all alone. Let me give you a little insight into the world of grocery shopping as I have come to see it. When I was fully able-bodied, the store was a place to go and get through as quickly as possible. There is a general pattern of traffic flow. People zip in and out and around corners, with an occasional "excuse me" as they reach for something. I know there are always a few shoppers that seem oblivious to their surroundings, either because they are on the phone, dealing with kids running around, or sometimes just because they have the ability to be in their own little world and not notice they are blocking an entire aisle, but basically the system works.

After the 2009 surgery, and the accompanying full length leg brace, shopping changed for me. I could no longer expect to get in and out of the store quickly, not because I didn't want to or wasn't physically capable of walking fairly quickly, but because people seem to want to understand me. I no longer fit their idea of a "normal" person, and I think they need to make sense of it, of me. It made for some strange and highly personal interactions with complete strangers. I couldn't get through a store without someone, and usually more than one person, asking what happened. Here is a variety of fairly common interactions:

• "Did you have knee surgery?" Quickly followed by a "Me too" and a lengthy description of all their medical issues. I tried to be polite and listen, and actually met some older people who I am sure didn't have many other people to talk to. Occasionally, I would be able to pray with someone who was hurting.
• "What happened to your leg?" Quickly followed by extremely personal questions about my health and medical record. "Have you seen this Dr.?" "Did you try this, that or the other -meds, diet, etc?" "Where was the tumor? Did it cause any other problems for you?" I think you get the idea. I tried to be polite and honest, but usually felt a bit like saying, "And any of this is your business why?"
• Others simply inquired, "Where did you get that brace? I need one like that because my knee hurts. Does it help? Can I get the name of your doctor? Can I take a picture?" I usually tried to be polite, comply with their requests without telling them this brace will in NO WAY help their knee pain!
• Last is the group that tended to yell out to me down an aisle, "Oh! I had (or someone I know had) that EXACT brace, so I know exactly what you are going through!" These were my personal "favorites" (please note the sarcasm, just because you or your Aunt Gertrude twisted their knee and wore a brace, or had knee replacement, you have NO idea what I am going through). I didn't always manage politeness in these situations, but tried to maintain composure despite being irritated and usually embarrassed as the 6 other people in the aisle heard the entire exchange and are now gawking at me.......and sometimes their children would just come stare and touch my leg.

If you are still reading, stay with me, this is where it gets good!

So, now I find myself in the situation where a motorized cart helps me be independent and shop alone. First off, let me clarify, it is NOT easy to shop from one of those. If I had a choice, I would definitely NOT use one. Have you ever been driving on a narrow road or bridge and found yourself holding your breath, or pulling in your arms as to make your car smaller? That is something I find myself doing in that cart. It is not easy to maneuver and you have to approach everything parallel to the cart and very close to you so you can reach. It makes shopping take a long time. It is a real endurance event for me between the waiting for people to leave room to fit in where I need to be, and the pain levels that build during the trip. Besides the pain in my neck and back from twisting, reaching, and looking up at everything, the hardest part is the people. Now, it seems that people no longer try to relate to me; no longer understand where I fit in their "normal" world, if I do at all. It seems people are irritated by me, or look right through me, or worse yet see me as some kind of circus freak to be avoided at all costs. Now when I shop I get one of a few basic reactions (only 1 person in all these shopping trips has stopped and asked if I needed help reaching something.):

• The first group of shoppers tend to not see me at all. I mean, I THINK they see me. I thought we made eye contact even, but then they park their cart in front of me and block where I was headed. They let their kids keep playing in the middle of the aisle and seem to not hear my "excuse me." Others rush to get around me as I am seen only as an inconvenient slow down. Some days I think I may actually be invisible! I shop with a extra helping of patience now, and ample time.
• The next group seem unsure what to do, so they dart away or grab their children and yank them, as if I were a monster too hideous to gaze upon. They don't know how to interact, so they avoid me. If given the chance, I'd love to interact and educate this group. 
• The last group is the hardest, and also the one that is making me a little ruder at the store and fight for my territory in each aisle. This is the group whose judgmental glances start the second I climb into the motorized cart, or sometimes the moment  I park in a handicap spot as they try to determine if I truly belong there according to their definition of handicapped. They stare a little too long, and look a little too disgusted for me to excuse this all as me being paranoid. This group has some bold members (albeit passive aggressive) who mumble under their breathe, or speak to their toddler as they walk past making comments about people like me being slow, in the way, taking up too much space, etc. Yep, they say all that OUT LOUD so I can hear. Twice recently I have gone to a corner of the store and cried. 

It is SO much harder to shop from a chair, although I am grateful that the motorized carts are available for my use. I feel a good about still doing something by myself, I usually need rest and pain meds upon returning home. Having a disability can be very isolating, and things like the stories above, are partially why. Sometimes I want to give up; just let Chad do everything, and stay home where it is safe and comfortable, but....

Having a disability effects the whole family. As hard as this is for me, imagine how this has affected the rest of our family. Chad works 40+ hours a week, and then has to come home and do all the yard work (which I used to do), help with or do the grocery shopping for us, help with or do the house cleaning, all of which I used to do alone. You may be thinking that doesn't sound to bad, single people care for all those things by themselves, but he also has to add the job of care taker. Have you ever helped a love one who was ill, injured, or dying? It can be a heavy physical and emotional burden. I can't go and do all the things we used to do, all the things he would still love to do but doesn't want to always leave me alone. It is the sandpaper in our lives that God uses to help us die to ourselves, making us more and more Christ-like, and it hurts.

My kids are grown now, but even they have felt the sting with additional workloads, and missed opportunities over the years. My daughter, still living at home, gives me help and time in larger quantities than most her age I am sure, and at times I am sure it is more of a chore than a blessing. I know that God is sovereign in ALL things. We taught our kids from a fairly young age that whatever our family goes through, it was all filtered through the loving hands of God. My disability is OUR disability. It affects each of us differently, but with the same goal- our sanctification, our good, and God's glory.

Having just returned from JAF Family Retreat, where it is truly safe to be in pain, tired, different, or to just be yourself, without judgment, was fantastic! Some of the families there are impacted by profound disability requiring round-the-clock care. Just imagine 24/7 care, 365 days a year!! This is why the Joni and Friends ministry is so wonderful. First and foremost, it presents the gospel to families affected by disability. They help families connect to others that understand, in a judgement-free zone. They provide care and encouragement to children and adults who face the daily limitations of disability and for the caretakers in the family that are often isolated and overburdened.

So, besides ranting, why have I shared all this? Well, for starters my blog was started as a way to educate others about what suffering is, how it feels, and most importantly, to share the love of God in Christ Jesus- His goodness, loving-kindness, mercy and grace to sustain His people.

But, today I also share all this to ask for YOUR HELP!! September 3rd, in Oak Brook, IL, my family and many others will participate in the Joni and Friends Walk-N-Roll 5k to raise awareness and funds to help those families touched by disability. I am asking you all to get involved. Would you:

1. Join my team (Tenacious Turtles) and come walk with us? Come meet some new people, learn more and be encouraged!
2. Donate to support this wonderful ministry and help me meet our team goal of $1000?
3. Share this info with your friends and family to help us meet our goal, even exceed it?
4. Turn and walk away, forgetting you read this and decide it doesn't effect you?

My prayer is for us to have a record breaking donation year! I hope that sharing my story, my struggles, encourages you to get involved and make a difference. Reach out with a kind word, or an offer to help a family you know whose lives are affected by disability......you all know at least one, even if it is somebody in a motorized cart in a grocery store struggling to maintain a little independence and dignity.

Defying Description

Have you ever been asked a question similar to "how would you describe chocolate to someone who has never heard of it or tasted it"? I find myself thinking along those lines when trying to put into words my experience this past week at the Joni and Friends Family Retreat. First, let me just start by saying if you, a friend, family member, neighbor or anyone you know has any type of disability, you need to go check it out! (Go ahead and do it right now, I can wait)

JAF Family Retreats are held in several locations each summer across the US. They also have international retreats as well. The website explains that it is a safe and caring environment for families with special needs, but that is just the tip of the iceberg. It was a truly amazing and unforgettable week! I have never experienced anything like this camp anywhere else in my life. It did not matter what your ability or disability level was, everyone was just treated with such love and respect. I witnessed what it truly means to be the hands of feet of Christ in a very real way. Volunteers helped with everything from bathroom needs, to feeding, to just being a true friend and so much more.

Each human being is created in the image of God, and although we are marred by sin and disease and death, we are all worthy of respect. I shed so many tears this week as I heard stories of how families and individuals have been touched and lives changed at Family Retreats. There is likely no place else on the planet where you can worship with such a variety of people. There are no judgmental glances or words when your child yells out, or runs around, or throws themselves to the ground. There is freedom and acceptance at a level I did not expect and cannot really explain. Disabilities ranged from mild to profound. It is humbling to see all the volunteers (many of whom are teenagers) give selflessly of their time to give families a break from the round the clock care that many of the campers need.

This was my first time doing anything like this and I was nervous that I couldn't handle it. What if I said or did the wrong thing? What if I was physically unable to keep up or do my job? All that worry was quickly washed away as I realized that I was finally in the one place where others would understand my fatigue and my limitations. It was one of the most forgiving and grace-filled weeks of my life. I enjoyed daily hugs and high fives from some of the campers, and they will be missed. I learned a lot about myself, both my strengths and weaknesses, and about God's sustaining grace and overwhelming mercy to gently show me my sins, help me to love others and give me His strength to get through the week.

We are back home and I am knee deep in dirty laundry, unopened mail and staring at an empty fridge. I really want to hop back in my car and go back to Michigan for week 2, but alas it is not to be. Only 51 more weeks until I can do it all over again though!!

This week's verse was from Nehemiah 8:10 "The joy of the Lord is my strength" and I can say I experienced that joy this week! Tears and pain and fatigue were plentiful, but overarching it all was God's joy.

Would you consider coming and serving alongside me next year? If that isn't a possibility, maybe you can give so that we or others can go serve (all volunteers have to cover all travel, lodging and meal expenses), or offer a scholarship to a family who could use a welcoming vacation among friends. Share the gospel message and love of God with those families affected by disability and be the hands and feet of Jesus in a real, loving and practical way.

Be encouraged and enjoy our theme song from the week!

Christian Service

"For even the Son of Man did not come to be served, but to be served, and to give His life as a ransom for many." Mark 10:45

So many times I have approached a task by thinking that I have something to offer, that I can do something to be a blessing to others. You would think by now that I would know better! God has shown me over and over again (apparently I am a slow learner) that whenever I show up to serve others, or to complete a task He has given me to do, that it is I who am blessed. I learn and grow each time. It is God who purposes and places us to perform the tasks He has called us to do. It is the LORD'S work, not ours. He uses a variety of people in a variety of places and circumstances to accomplish His will and for His glory. We may not always like the task He has given us. We may not be happy where that task leads us (49 degrees in Michigan this morning....and we packed for summer), but we need to remember that it is NOT about us! It IS and always SHOULD BE about HIM ALONE!!!

"...whatever you do, do all to the glory of God." 1 Corinthians 10:31

We should work and serve "heartily, as unto the Lord and not men, knowing that from the Lord you will receive the reward of the inheritance." (Colossians 3:23-24) We are not to be self seeking. Romans chapter 2 warns us that it is "God, 'who will render to each one according to his deeds' : eternal life to those who by patient continuance in doing good seek for glory, honor and immortality; but to those who are self-seeking and do not obey the truth, but obey unrighteousness - indignation and wrath, tribulation and anguish, on every soul of man who does evil.....but glory, honor and peace to everyone who works what is good." Rewards are not given based on our success, but on our faithful service.

If you know me at all, you know my many weaknesses. I am a detail-oriented, perfectionistic, control freak, that has a hard time "going with the flow"!! This week I am serving at Joni and Friends Family Retreat with my husband, Chad, and my daughter, Katherine. Once again God is at work in my heart. Things may not always go as planned, but God is faithful and patient to show me His goodness and kindness through others. This week our theme is the JOY of the Lord is our strength from Nehemiah 8:10. The week is just getting started. I am tired already, and because of my disability I don't have a lot to do. I have way more free time than I expected. It is difficult to get around this large campus. I feel a bit isolated. I am not one of the families or campers here, but I am also not really one of the STMs (short term missionaries). OK, technically that IS my "job title" and yet I am only working a couple hours each afternoon sitting in the bookstore 3 days this week.

Why am I telling you all of this? It is part confession and part (hopefully) inspiration. Last night I returned to my room and wondered why am I even here. I am too tired and have too much difficulty getting around to do all the things I anticipated. I am new here and don't know where to really go do something that I can do to be useful. I feel under utilized. I. I. I. I. Yep! Last night I realized it isn't about ME. God didn't bring me here to serve Him so I could throw a pity party for myself. So I woke up this morning and read and prayed and found a great sermon to help me get my eyes focused back here they should be.

My eyes should be on Jesus, and my service offered to Him. It is not about me. It is not about what I want. It is not about my abilities or inabilities. It was never supposed to be. Here is Alistair Begg's introduction to the sermon that greatly blessed me today- "All who are called to Christ are called to service. With any ministry, it is important to keep in mind that it is the Lord's work; He assigns the tasks and uniquely gifts a variety of individuals to work together to fulfill His plan, for His glory. The ideal place to serve God is wherever He has placed you, doing whatever He has given you to do. As Paul notes in his closing remarks to the Corinthians, great opposition often accompanies effective ministry."

Such a good reminder that when God hands us a job to do, we need to go and do the job! Accept your limitations- you can't do everything. Embrace your responsibilities- you can do something. We cannot worry about whether or not we do it perfectly. It is not about whether or not you like this job, or like him/her you are working for or with, but instead, it is about doing the work of the Lord. What I should be concerned about is 'am I doing the work of the Lord?' That is the real issue.

Once again I am humbled and repentant. I am thankful for the work that God is doing in my heart as I learn to submit and to trust and to lay down my life in service to Him. So I carry on, not in my own strength but in His. I head out to meet and talk to as many people as I can, because God has already shown me that it is the little moments- a kind word, a gesture, or just being available to can be a blessing to others and to myself. I am here this week to serve God in the way He has prepared in advance for me to serve. As much as anyone here, I have a lot to learn about myself, others and the Lord of the universe. May God alone be glorified!!

Get up and go do the job to which YOU have been called.......

"Let us not grow weary while doing good, for in due season we shall reap if we do not lose heart." Galatians 6:9

Celebrating Joy

Back in 2013, I wrote about my daughter, Katherine, who was about to go serve for a second year at Joni and Friends Family Retreat. I am proud to say, she has now served four consecutive years, and is preparing for her fifth next month. I am excited to announce that in June, my husband, Chad, and I will be joining her!! She is super hyped that we finally signed up to go along! Their theme this year is about celebrating joy, which makes me think of these verses from James chapter 1:

"Count it all joy when you fall into various trials, knowing that the

testing of your faith produces patience. But let patience

have its perfect work, that you may be perfect and complete,

lacking nothing."  ~James 1:2-4

Some days it feels as if my life is one continuous trial after another. I am both excited and nervous to go and serve this summer. There is not much new to report about my health, but I definitely feel that the numbness and weakness are getting worse to the degree that I have decided to try the final choice in medication. I have struggled recently dealing with my need for help with so many of my daily activities. Katherine assures me that if ever there was a place where it is okay to be unable to do something, to be sick, in pain, or need to rest, it is at a JAF Family Retreat. My next appointment is on May 13th, my birthday, *shameless plug*, and I will discuss starting Ritixumab at that appointment. I am going to ask that we start it after my return from Family Retreat, since I do not want to be sick during that! In the meantime, I am trying to adapt to my new "normal", praying God might be merciful and bring healing and that the medication might be effective without any of the very serious side effects.

Regardless of my current health issues, I have joy in knowing God, knowing He can still use me, despite my disability and circumstances. I trust that my trials are producing patience in me. I am learning to be more compassionate, which is historically not my strong suit - just ask Chad how sympathetic I am when he is in pain or sick! I am thankful for all that God has done (and is still doing) in me. I look forward to being at a place where no one judges me by my inability to do something, but where they simply see me as a child of God, created in His image to bring glory to His name. Ultimately my joy comes from knowing that Christ has secured my salvation, and "our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory." (2 Corinthians 4:17)

I covet your prayers for my health to get through this upcoming mission trip. I know God is faithful and will strengthen me to accomplish all that He has called me to do. I pray that God will revive my own heart, as well as let me be an encouragement to someone else. I am truly feeling blessed that I will get to serve alongside some of the greatest people on earth (just ask Katherine, she can verify this)! I cannot wait to return home with pictures and stories to share! 

Are you letting trials steal your joy or keep you from doing something for God? Don't let trials hold you back! Keep your eyes upon Christ, and He will give you strength. "For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them." (Ephesians 2:10)

Living Like There is No Tomorrow

Matthew 6:34 says, “Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.” It is very easy to get overwhelmed thinking about what next year will bring, or five years. Just listening to a nightly news broadcast about the state of the economy is enough to make you shutter at what your life will look like in 20 years when retirement approaches.

In light of my recent medical issues again, I find myself wondering if I will be able to walk ten years from now. Then I stop myself. The thing is, I can walk today, and that is what matters. Today is the day I have been given to serve God. So for today I will do all I can to bring glory to God in this failing body and let tomorrow worry about itself.

The truth is that tomorrow promised to no one. We only have this day. Do we live each day to the fullest? Is it possible to live each day as our last?

Drywall Patching, Car Shopping and the Body of Christ

So what could patching holes in dry wall and car shopping in the snow teach me about the body of Christ? Plenty! But first, what is the “body of Christ”?

When people refer to the “body of Christ” it is in reference to the group of people in a local congregation (or body) who believe in Jesus Christ and work together to do the Lord’s work. Here is what the Bible says about this:

         1 Corinthians 12:12-26 

12 The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body. So it is with Christ. 13 For we were all baptized by one Spirit into one body-whether Jews or Greeks, slave or free-and we were all given the one Spirit to drink.14 Now the body is not made up of one part but of many. 15 If the foot should say, "Because I am not a hand, I do not belong to the body," it would not for that reason cease to be part of the body. 16And if the ear should say, "Because I am not an eye, I do not belong to the body," it would not for that reason cease to be part of the body. 17 If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18 But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.21 The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" 22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, 25 so that there should be no division in the body, but that its parts should have equal concern for each other. 26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

It is God who arranges the parts of the body in the local congregations (verse 18). This is an important fact. Each church is made up of a group of believers that have been brought together to function as one body, to do the Lord’s work and bring glory to His name.

So, back to my story, patching and shopping are all a part of showing me the intricacies in the way the body works together.  About a week ago, we decided to rearrange some of our furniture after replacing the carpet with hardwood flooring. The last item we attempted to move was a rather large couch in the basement. We can recall bringing this particular couch down to the basement several years ago, somehow fitting it around a narrow and twisty set of stairs. (Maybe we were wrong?!) After multiple attempts, by multiple people, the couch won and ended up staying in the basement. In the process of trying to get the couch around the narrow corner of stairs, some holes were made in the drywall. (For those of you reading that don’t know us, yes, we embrace the notion that if it doesn’t fit, you should force it).

We are not dry-wallers. In fact the whole situation caused me a bit of stress. Then along came a member of our church who does have experience dry walling, and painting. He graciously offered to come help do the repair for free. He enjoys doing it, and likes having something to do since he is retired, and we are blessed in the process.

Meanwhile, another member of our church is trying to buy a used car on her own and is feeling a bit stressed as well. I (who used to sell cars and actually thrive on a bit of confrontation) agreed to go with her and help negotiate. She was very grateful for lessoning her stress, and I was excited to help because I love giving a salesman a hard time! We headed out in below freezing temperatures, in the snow, and had a successful trip.
I had a great time! Me, the disabled, middle-aged (did I just say that out loud?) woman, who doesn’t get to do many of the things I used to enjoy, was able to go and help someone and get a bit of an adrenaline rush by negotiating a good deal. I feel blessed to have been able to help. I feel blessed because I was helped by someone else. This has been a great week, and a wonderful example of the body of Christ working in perfect harmony; each of us using the gifts we were given for the benefit of others. The world calls it “paying it forward”; I call it the satisfaction of bringing glory to name of our Lord.

This may seem crazy or insignificant to some of you, but for me, it is an amazing thing to stand back and see God at work. He arranged each of us in such a way that we could all help each other. In the end, we were all blessed because of our serving others and also in being served. How beautiful it is to see each of us able to do what our gifting and talents are for the glory of God.

What is your gifting? How do you use it to be a blessing to others while being blessed yourself?

Does This Excuse Make My BUT Look Big?

There are those things you should do, you would do, if only…(fill in the blank). You know what I am talking about!

I would serve at church… BUT…my week is so hectic; I just need time to relax.

I would give more…BUT…we never seem to have any extra money after we go out.

I would forgive…BUT…that person hasn’t repented, and she should ask for my forgiveness.

I would go…BUT…I am no missionary, besides, I am so busy.

I would teach…BUT…that is really not my thing.

I am thankful Jesus didn’t make excuses like we so frequently do. Is there someone you should go help, somewhere you should go serve, BUT you haven’t done it yet? This week, take a little time out of your busy schedule to serve someone else. Maybe it is time to stop and ask yourself, “how big is my BUT”?

What excuse do you have?

Potpourri Friday- Serve or Be Served

Ministry Spotlight

Many of you know Joni Eareckson Tada’s ministry ‘Joni and Friends’; for those who do not, here is her story.  

Today I’d like to shine a spotlight on a Joni and Friends ministry called Family Retreat.

If you or someone you know are disabled (child or adult), you may be interested in learning more about this experience. It is one amazing week of encouragement and strengthening of families dealing with a disability. There is something for everyone: boating, hiking, zip line, climbing walls and activities for siblings of special needs children. All activities are accessible for everyone. A STM (see below) is assigned to each family for the whole week to assist with your needs. Parents are able to spend some time relaxing and attending practical seminars on a variety of disability topics. Register early as space fills up fast and results in a waiting list every year. (Cost varies by location)

For more information, to find a camp location near you or to register:

For families affected by disability-click here.

If you are interested in serving as a camp counselor, called a “STM” (Short Term Missionary), family retreat is a great place to serve with your heart and hands. You will be paired with a child, teen or adult with a disability. STMs do not provide medical care, but provide friendship and general support to the family. 

My daughter, who served last year as an STM and will serve again for two weeks this year, says, “Serving as an STM is truly an unforgettable experience and one thing is certain: you will walk away from Family Retreat changed.”

To apply to serve as a STM-click here.

How Well Did You Serve Today?

I ran across a little note card that I had tucked away in my bible. I had written down just two short questions that our pastor had asked us during a sermon. I have looked at it many times, and to my shame, have tucked it back away in the Bible only to be "rediscovered" a few weeks or months later.

Here are the two questions:
#1 Were God and His anointed, Jesus Christ, exalted and glorified today?
#2 How well did I serve?

How quickly two simple questions can stop me in my tracks. How I would love to be able to say I have the "right" answer to those questions every day of my life, but I don't.

I pray that God would be glorified in me each day, and that I might serve well.

We have been saved not just from a life of sin, but to a life of service. Christ said He came to serve, not to be served. (Mathew 20:28) Christ willingly laid down His life. As servants of Christ are we ready to lay our lives down in service to one another? May we be challenged by these two questions and seek to glorify God and serve Him well, but serving others.

Have a great weekend!