Thursday, January 26, 2017

Seeking the Lesser

Being sick stinks. It doesn't matter if you have a cold, the flu or a stomach bug, no one wants to be ill. Chronic illness is a difficult and unpleasant road, and I want off of it. There is rarely a day that goes by that I don't pray for God to heal me, to ease my pain, to make my body work right. I know that He is able. I started reading the book of Mark this morning, and although I have heard the story dozens of times, this morning it seemed to really touch my heart.

Mark 2:1-12 (ESV)
Jesus Heals a Paralytic

"And when he returned to Capernaum after some days, it was reported that he was at home. 2 And many were gathered together, so that there was no more room, not even at the door. And he was preaching the word to them. 3 And they came, bringing to him a paralytic carried by four men. 4 And when they could not get near him because of the crowd, they removed the roof above him, and when they had made an opening, they let down the bed on which the paralytic lay. 5 And when Jesus saw their faith, he said to the paralytic, “Son, your sins are forgiven.” 6 Now some of the scribes were sitting there, questioning in their hearts, 7 “Why does this man speak like that? He is blaspheming! Who can forgive sins but God alone?” 8 And immediately Jesus, perceiving in his spirit that they thus questioned within themselves, said to them, “Why do you question these things in your hearts? 9 Which is easier, to say to the paralytic, ‘Your sins are forgiven,’ or to say, ‘Rise, take up your bed and walk’? 10 But that you may know that the Son of Man has authority on earth to forgive sins”—he said to the paralytic— 11 “I say to you, rise, pick up your bed, and go home.” 12 And he rose and immediately picked up his bed and went out before them all, so that they were all amazed and glorified God, saying, “We never saw anything like this!”"

The paralytic man was brought to Jesus to be made well. Jesus tells him that his sins are forgiven. People hearing this, grumble, question, and accuse him of blasphemy. It was Jesus' response that really hit me this morning, and was a great reminder. Jesus asks "which is easier, to say to the paralytic, 'Your sins are forgiven,' or to say, 'Rise, take up your bed and walk'? 

Jesus had already told the man his sins are forgiven, but it wasn't until Jesus healed him that "all were amazed and glorified God." May it not be that I would be a person who seeks a healing, a simple sign, or the "easier" of the two. Today I was reminded that for Jesus, healing me is the lesser, just frosting on the cake if you will. What I should be doing is thanking God for doing the greater in my life. My sins are forgiven!! I am amazed!! May I bring glory to God by telling you all, that it is God alone who forgives sin, and He provided that through His Son, Jesus Christ.

It may not be a sin to want to be well (although it certainly can easily become sin), but I urge you to seek the greater and not the lesser. May we quit seeking wellness, relief, an easy life, or a quick fix! Turn from your sin and seek the One who can do both the greater and lesser. Remember that forgiveness of sins is the greater work in your life; the greater gift and blessing. May my longing to be something I am not (in my case made well, it may be something different for you), be replaced with gratitude for what I am. Praise be to God-

Until next time-

Saturday, December 3, 2016

Judging By Everyone's Reaction...

You may have noticed that I avoid controversial (especially political) posts on Facebook. I am confrontational by nature, so it is not that I am a shrinking violet, but wisdom has taught me that online arguments are rarely beneficial.

Today I tread into controversial territory, prompted initially by my daughter who thinks I should become an advocate, and then by my frustration with the medical and legal establishments.

Judging by everyone's reaction, you would think marijuana is a bad word. Medical cannabis, to be exact. In Illinois, the governor signed the "Compassionate Use of Medical Cannabis Pilot Program Act" on August 1st, 2013. It has been over three years since cannabis became a legal option for several medical conditions, and a viable alternative to the normal pharmaceuticals that doctors prescribe.

As someone who is in a lot of pain, and has a qualifying condition, I have wondered if cannabis might be helpful. Just the fact that I have thought about trying it has filled me with shame and embarrassment. Now, three years later, I finally worked up the courage to ask one of my doctors in a quiet voice, for fear of judgment. Here is what my experience has been like.

In the past decade, I have been offered the following prescription medicines to help with pain, neuropathy, sleeplessness, and migraines. (I am not sure this list is exhaustive, as there as SO many for me to try and remember!)
Fentanyl (pops)

Out of this long list of drugs that I can remember being offered, I actually received a written script for about half of them. Out of those prescriptions, about half were shredded and never filled after I read about side effects and addictive qualities. I opted rather to remain in pain. Of the 25% of the list that I actually did get filled, many ended up in the garbage after a couple days. For example, on the third day taking Cymbalta, I was driving down the street feeling zoned out and had an overwhelming feeling that I should let go of the steering wheel and drive off a bridge. It scared me so much that I promptly went home and destroyed the rest of the bottle, avoiding all prescriptions for a while.

If you read about some of these, I would hope they would scare you too! Like the Fentanyl pops the doctor gave me to take at bedtime to help with pain and sleeplessness, along with a warning that someone should monitor me, since it can cause you to stop breathing! Wh-what!?!! Needless to say, I did not fill that script!

Doctors are so quick to offer these kinds of drugs to me, but when I inquired recently about the medical cannabis, here are responses I got:

  • One doctor told me it would be helpful, but doesn't want to get involved. Referred me elsewhere.
  • The doctor I was referred to said I that the first doctor really should take care of it.
  • Another doc said that if I take illegal drugs (wait, but it is legal in Illinois if I am qualified!), he would not see me again, and then requested a drug test.
  • Still another doctor thought I could benefit greatly, said it doesn't "get you high" and that it is so much safer than narcotics, but because federal laws prohibit it, he was afraid to lose his license. He did offer me a new pain medication if I wanted that instead.

I have been embarrassed during this process, and made to feel like an addict or criminal, which is sad. I am not even sure if I would like it, or if it would help me, but it seems like a less harmful drug than most of the ones listed above. There has been some promising science behind the many benefits of cannabis. Unfortunately, since it is still illegal at the federal level, there haven't been many legitimate clinical trials. So, why would it be so difficult to get marijuana legalized for medical reasons, if it could truly be helpful and less harmful? Why would doctors not want to study it and prescribe it?

A documentary I recently watched, uncovered the powerful lobby against legalized marijuana. The federal government classifies marijuana as a "Schedule I Drug" putting it in the same category with heroin. You might find it interesting that the same plant heroin is derived from (Opium), is the SAME plant that many of the narcotics above are made from.

The documentary investigated what groups are behind those powerful lobbying efforts. I was just as surprised as the person in the video to find out, that although "Big Pharma" does lobby against the legalization of cannabis, they are NOT the largest group of lobbyists behind the movement.

First, are the police and prison guard's unions. Police departments benefit from seizure laws, and that money pays for a lot of their equipment needs. Prisons are full of people serving time for marijuana-related offenses, and there is a fear many guards will lose their jobs. Second, and perhaps most surprising to me, was the alcohol industry. Their fear seems to be that people only have a certain amount of expendable income, and they don't want it spent on cannabis instead of alcohol. 

Putting away my soap box, and hoping we can all figure this out without condemnation. I would love to hear your thoughts. Please comment below (keep it nice), and tell me do you think marijuana should be legalized? Should the medical community embrace it, study it and make it more available?

Resources (just so you know that all those meds haven't cause me to dream this all up!)







Wednesday, November 30, 2016

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.

Monday, November 14, 2016

"Can't We All Just Get Along?"

When it comes to some of our most deeply held beliefs, we frequently point back to a parent, a teacher, or some meaningful event in our life that shaped our views. News stories, peer pressure and office talk influence us also; and the list goes on and on.

As a young person, I was an atheist. I did not believe in God, and never attended church. I didn't worry about tomorrow, and felt I felt I was accountable to no one. Why? As a child, I believed what my mother believed. It made sense to me at the time. As my mother got a little older and she read books by Edgar Cayce, and similar people, she embraced a lot of new age ideas, including reincarnation, and I changed right along with her. We talked a lot about religion and what happens when we die.

Politically my mother was what some would call a liberal, tree-hugging democrat, and so was I. We had memberships in Green Peace and World Wildlife Funds, and the bumper stickers and t-shirts to prove it. I was strongly in favor of gun control, and abortion.

This reminds me of what I have been told many times, by many people concerning parenting: "You did the best you can at the time, with where you were and what knowledge you had." As children, we tend to believe what our parents believe, and as we age and begin to think for ourselves, our views change along with us.

As a young adult, I was more agnostic than atheist, but still a Democrat, and even campaigned one year for a local election. After I became sick in 1998, and a co-worker of Chad's invited us to church, we became Pentecostal Christians. Later as we interacted more with the church, other Christians, read and learned about the Bible we shifted again to a conservative Republican stance. Fast forward to today and we are currently in the Reformed Christian, Libertarian, pro-gun, pro-life camp. But why? How could I have believed everything from the far left, far right, and everything in between?

Is it because we are smarter than others? Or more stupid? More hateful or loving? I would say NO! While our personality, life experiences, IQ and other factors may influence our belief system, it is important to recognize that the Bible is full of references to the fact the it is God who gives wisdom, knowledge, and understanding. The reason I have believed so many different things is because I am a sinner.

You may be wondering what any of this has to do with my normal writing about physical suffering and why I am bringing this up. The answer is because lately I have felt heartbroken at recent events and social media posts. Both sides of the aisle are casting stones. Lots of hate, boasting, and intolerance. At every point in my life, I had firmly held beliefs, and yet clearly I no longer believe what I did when I was younger. As I sit here today, I can honestly say that I don't always know what the truth is. I have been wrong before, and I will be wrong again. I have done the best I could, with the information I had at the time. I was passionate and sincere in my beliefs, but sincerely wrong. I need to constantly be comparing what I believe to God's word, and where I am wrong, I pray it would be made aware to me.

As a Christian, what has been most troubling to me is the gloating and arrogance I have witnessed from other Christians regarding the election. I did not become a Christian until God removed the scales from my eyes. Since it is God who is the source of all wisdom and knowledge, He alone opens our eyes to that truth. Because the human "heart is deceitful above all things, and desperately wicked" (Jeremiah 17:9), I should be on my knees in prayer asking for wisdom and humility. It is by God's grace rather than personal knowledge that we have understanding. We should be painfully aware of our tendency toward arrogance and pride, and the fact we have all held wrong beliefs in the past. We should pray for God to be merciful and uncover the areas of error in our lives, because we all have them.

I keep thinking that what we need is more love and grace towards our neighbor. People are worried and scared for various reasons. They don't need us to gloat or point out their political errors. They need Jesus. We should be in prayer for them, for God to open their eyes like He did ours, and in prayer for ourselves to be a loving, faithful witness.

Before I end, I want to just clarify something; the Bible is very clear on the gospel message and many other issues. While I have believed wrongly about things past, present and future; I know that God's word is true, and it can be trusted, but it must be handled with care. We are a sinful, rebellious people, prone to err and pride. Apart from Christ, we are headed to hell. God must remove the scales from our eyes to see Him and understand His Word. The clearly revealed truth of scripture is that unless you repent you will perish. Again, may I suggest that all of this should cause us to proceed cautiously, on our knees, in humility.

I titled this post using the famous words of Rodney King, "Can't we all just get along?" But sadly the answer is no; not apart from Christ, but we can be very gracious and remember that not everyone believes the exact same as we do. What an incredible opportunity we have been given this holiday season to be a light onto this world, and love our neighbors as ourselves. My prayer for each of us is that we would be humbled as we hear differing views on politics and other things, knowing that "such were some of you. But you were washed, but you were sanctified, but you were justified in the name of the Lord Jesus and by the Spirit of our God." (1 Corinthians 6:11)

In Christ-

Monday, November 7, 2016

You Suffer Too

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

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

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

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

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

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

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

Until next time ~

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

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

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

Sunday, July 24, 2016


This coming Tuesday, July 26, I will have my 3rd infusion of Rituxan. I am doing one infusion each week for the first month, and then another infusion every four weeks for 6 months. I knew the doctor wanted me to give it 6 months, but thought it was just the 4 weekly infusions and then waiting. It will most likely take 4-6 months to see any results, if there will be any to notice. In the meantime, we wait. So far, the worst side effects have been some nausea, mild body aches, and overwhelming fatigue. (Oh! and too many tears!) The biggest danger of the medication is being exposed to someone who is sick, because my immune system is compromised. I am being very diligent to ask people if they are sick, wash my hands frequently and sanitize everything.

I tend to over-analyze everything. I am definitely a "can't see the forest for the trees" kind of gal. While this trait can be a gift if you are trying to fix a problem or evaluate the effectiveness of something, when you are just trying to live life, it can be a real detriment. Thinking and re-thinking about everything can lead to worry and fear.

I have been going through some tough stuff lately, as I am sure you are aware. I am trying this medication after a long list of drugs that haven't worked and/or caused serious side effects. There is very little else for them to offer me. The doctors feel the benefits outweigh the risks, but the risks are real. Like any chemotherapy drug, getting an infection that you can't fight off, can be a serious and even life-threatening situation.....and that scares me a little. Perhaps, even more so, I fear that the treatment won't work, and I will end up never walking again.

Lately, when people ask me how I am doing, I respond by saying "I'm hanging in there" and that is true, I am hanging in there. You have all watched a movie scene where someone is hanging off a building and holding on for dear life. They are clutching the ledge or another person's hand with all their strength, but over time, they slowly start to slide. One finger, then another, and then just one arm is holding them up. Those fingers start to slip, and the camera zooms in to see the fear in their eyes as they lose their grip and start to fall. I feel that tension. I am slipping. I have just have a couple fingertips still on the ledge.

"Trust falls" have become a popular team building exercise to establish trust in a group. You may have seen them done or tried it with friends. One person stands with their back to a group of people, and then they fall backwards and trust the others will catch them. Why is this so hard to do, even with people you know? I think it is a control thing. Trusting others to catch you, knowing you are vulnerable and that you may not be able to catch yourself if they fail, is very difficult. It is a complete loss of control. For control freaks like me, it is an unsettling time, even fearful. I have gone through one trial after another, and each time I learn this lesson a little better: I am NOT in control. I never was. I never will be.

I am reminded that I am not alone on this ledge. Most days I still strive to hang on in my own strength, when all I really need to do is let go. "For God has not given us a spirit of fear, but of power, and of love, and of a sound mind." (2 Timothy 1:7) He has given us HIS Spirit. 1 John 4:18 says that "perfect love casts out fear" and that perfect love is found in Jesus Christ. That perfect love was pictured at the cross, as Jesus took the weight of all our sins upon Himself, and as the wrath of God was poured out upon Him. Jesus laid down His life for us and the "love of God has been poured out in our hearts" (Romans 5:5). Fear is replaced with His love. His light casts out the darkness. Despite our struggles and sufferings, we are able to rejoice, and to trust. We can finally let go. We know we can fall into His perfect, loving arms, and He will catch us. He will hold us up. He alone is trustworthy.

So, today I am letting go. Perhaps it would be more accurate to say, "Today I am letting go again, hoping I don't climb back up just to be 'hanging in there' in my feebleness." Maybe, just maybe, I have finally learned to trust and not fear. I don't know what the future holds, but I know where I will land when I do my "trust fall"........into the arms of my loving Savior, right where He wants me!

Where will you land when you fall?

Tuesday, June 28, 2016

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 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.