Ever been there? Like you have no one in the whole entire world to talk to or who may understand what you are feeling, or the motives of your heart and life? Maybe you have a loved one who you used to tell everything too and they are no longer a part of your life. Maybe you have a spouse who just seems to be on another planet from you right now! Maybe you have children who are moving on in their lives and you feel displaced. Maybe you are the pastor’s wife and give out a lot of counsel but you have no pastor’s wife to go get counsel from. Maybe you are facing a health crisis that no one else understands because they don’t have your health crisis. Maybe….maybe…maybe. I’m sure you can fill in anything I did not mention.

I have been in every single on of these situations!! 

I have read my fair share of how-to books to help me. How to improve your relationships. How to communicate with the man from Mars. How to help your children mature to adulthood and not fall apart. How to deal with every angle of ministry. How to have grace in our sufferings. How to…how to…how to. The books are helpful, but I have never found them to be enough.

Can I get real simple here?

In every one of these situations, when I am at my all-time low, when I literally feel the loneliness oozing out of my stomach, into my throat and pouring out my eyes. When I am in my bathroom or shower (my sanctuary of solitude) and heaving with an absolute broken heart, there is only one thing….just one thing…that brings me comfort.

I told you it was simple. It is Jesus.

When I cry to Him and say, “God, why does it seem you take and take from me? Relationships with family, dreams of that perfect marriage that has no cracks or flaws, children that I adore that I know will grow up and leave someday, people that you want to love and minister too that be can be so hard to understand at times, my health…why?”

I hear Jesus simply say, “I get it. I know what you are feeling. I will never leave you nor forsake you. I will never shun you. I will never break your heart. I know your motives. I know your dreams and fears. I know your worries. I won’t falsely accuse you because I am the Truth. I am always here with you and you are not alone.”

I just dwell on that. I may not be able to pick up a phone and share my heart. I may not be able to get anyone on my planet to understand me (I am complicated!). I may not have good health the rest of my life. But I have Jesus and therefore, I am not alone.

Loneliness can feel so awful, but truly, if it drops us straight in the comforting arms of Jesus, it is not a bad thing. Even that, is working in our lives for good.

Maybe you are in a season of loneliness right now. Turn to Jesus. Oh what a friend He is!

Please enjoy one of my favorite songs:

I am a simple country girl. I love simple things. I love sunshine and rainbows, baby giggles and dimples, pretty flowers and birds singing, crazy kids and cute animals, HGTV and Food Network, chocolate and herbal tea. Just simple pleasures.

When you get in the world of advocacy, it is easy to speak of what we know – our life with a disability!! But, many times, disability advocacy involves a lot of complicated things. Writing or sponsoring bills is complicated. Speaking to our representatives can feel overwhelming and intimidating. Being the only voice many times to make change can be lonely and feel non-rewarding.

Advocating can be personal like telling the manager that the bathroom door is hung wrong or that the handicap parking is being abused. It can be local as we advocate for broken sidewalks to be fixed or bus lifts to be maintenanced. Or it can be national as we work with legislation that deals with decisions that will affect all people with disabilities.

Entering the world of advocacy does not need to be complicated. So, let’s break some things down and let me give you some tips to help get you busy!

How To Get Your Head In the Game:

• Remember that disability issues, on any level, affect us. When they do affect us negatively, we will not like it and will complain! We have NO right to complain, if we are not willing to be a voice to help make a change.

• Remember that your voice for change does not only affect you. You are representing a large demographic of people who have disabilities. Have the courage to speak not just for yourself but for others as well.

• Don’t get discouraged if you do not see immediate results. We are reaping today the results of advocacy 25 years ago. Our voices today may not see the change we want immediately, but it will help shape the future.

• Our lives have value. We are not asking for special favors. We are asking for equal favors. We are just talking to people – just like us. Even those who hold high offices are just people. We must appeal as a human to another human.

Advocacy Tips:

• Speak nice.

It is so easy to get frustrated and want results, but rudeness or being harsh will only turn them off to our message. We must say the right thing the right way. Being confident and passionate does not mean being cocky and pushy. Keep the balance.

• Speak plainly.

Make our requests very simple. We do not have to explain a million reasons. Be clear with what the issue is, and offer a solution. They do not live in our world so do not leave them hanging how to fix it. I was recently in Washington DC and they had a very nice accessible bathroom except the door to the handicap stall was hung where it swung into the stall which prevented me from being able to close the door. I asked for the head of that department, told them how nice there restroom was and how I appreciated the electronic doors (speaking nice), informed them that I was not able to use their restroom because the door was hung wrong and all that needed to be done was for maintenance to hang it the opposite direction. I thanked them and a work order was issued and completed that same day. If I had only called and complained, they may not have even understood what needed to be changed. Give them a solution and not just a problem.

• Speak their language.

The truth is that unless they have a disability or a very close family member or friend that has a disability, they will not understand our language. When we are trying to convey our message to them, we must get into their world and create scenarios they will understand so that they will understand our world. 

For example, while advocating for a state parenting bill, I looked at their physical features and asked if they would be okay if someone took their children because of their freckles…or black hair…or mustache…or the glasses they wore. Immediately they answer, “NO!!” Now I know I have them. I then explain that people with disabilities can abuse their children, but children should be taken because of abuse – not a disability. They understand that.

In Washington DC, we were working on several issues and I would give them scenarios to help them understand what we were talking about.

For the bill that asks Congress to protect our access to our essential complex rehab components, I asked them what would happen if the DC metro shut down for a day or two. They would look shocked and say it would be awful! They knew right then that their bread and butter would be shut down also. I made a point to continue that logic and that it would greatly affect their work. I shared that this is what happens when we do not have the accessories that are needed to keep our lives going.

For the bill that asks for a separate category for our complex rehab technology to be recognized under Medicare, I asked them to pretend that they were in an accident and lost their leg. Then, I told them that I would take them to the room where 10-year-old boy legs were kept and asked them to pick the one they wanted. They told me that a 10 year old boy leg would not work for them. I stated that was true because it cannot be a one-size-fits all with something so unique and custom to the human body. I went on to explain that is what our complex wheelchairs are to us – custom prosthetics that fit our unique body needs and we need it to be pulled away from a one-size-fits-all umbrella.

For the appeal to protect urological supplies from being included in the competitive bidding process, I would briefly describe that just as my unique chair replaces my legs, my individual catheter needs replace my bladder. I then told them about a catheter that costs $1.75 each and if you pee 4-5 times a day that equals $5,000 a year. I asked if that is what they pay to pee each year? Of course, they are shocked and agreed that is not right.

In the past, I have used their house, their shoes, their cars….anything I can think of that they would be greatly diminished if they lost it as my examples that they can feel right then in the moment. I could say, “imagine if you were paralyzed…” but the truth is, they cannot imagine that. There is no way they will make that connection in their mind unless they have experienced it. So, I have to take something that they do currently feel and understand and take that from them. Now they feel it.

I would talk about the budget and I knew that it came to the bottom dollar, but when your budget decisions cause people to suffer, than are you really working for the people?

Word pictures and thinking of examples to help them feel our fears and frustrations is extremely helpful in getting them to receive our message.

• Speak something!!

Any advocacy, at any level, is better than none! We are selfish to say nothing. We owe it to one another, and for those who are not able to speak, to advocate. There is ALWAYS something to be done. You can start small, you can start with a friend, you can start with an organization like United Spinal, or you can go solo and pick one issue at a time. But, start somewhere!

I hope this all makes advocacy seem a little less scary and that you will see that advocacy will open doors of opportunity for you, bring changes that will help many others, and helps with healing as it brings value to the path we have been given to travel.

Go get ‘em!

*Please share your advocacy thoughts and ideas in the comments!

The previews are awesome. Finally…another beautiful story of love with a person with a disability! But don’t be fooled! 

Please watch my opinion of this story. It is a strong one that I make no apology for. I will be running videos through this blog, as they are shared with me, to show you the positive side of what it means to all live boldly…with those around us…for a realistic view of our wonderful lives with disabilities.

Check back as I post videos of others like me!

Words are so very powerful. We know that they can hurt, heal, hinder, harass…I really can’t think of any more H words! 🙂 The old saying, “Sticks and stones may break my bones but words will never harm me” sounds good but it is the farthest thing from the truth. 

When I was a kid, I was a tomboy and always, always had cuts and bruises all over me. Bike wrecks, cowboy stunt moves, volleyball dives, thorns and briers from hikes in the woods, scuffles with siblings…something had always left its mark on my body. Do you know that I do not remember the pain of any of those physical scars? I remember the incidents, but I don’t remember the pain. In contrast, I remember hurtful things that people have said over the years and you immediately feel the stab in your heart and you can feel the pain all over again. The pain is especially hurtful if it comes from someone who says they love you.

Words are something that you can never blame on someone else. The phrases, “The devil made me do it,” “I can’t help it, they just made me SOOOO mad!,” “Well, if you hadn’t of started it…,” “It’s my personality. It is just who I am. Deal with it,” are so FULL of baloney. Someone may break your arm by pulling it behind your back, but no one has every invented a way to pull words out of someone’s mouth without permission. We are 100% in total charge of our words. No more excuses about it.

With that being said, our words should have weight. They should have value. They should have meaning. They should be respected.  They should be kind. They should be encouraging. Even if a hard thing has to be said, it should not be done harshly. Our words should speak life to other humans – whether we agree with them or not. I often tell my children, “It is not what you are saying to me. It is how you are saying it. Start over and do it right.” Do they always get it right? No. Do I? No. But I would hope that my pattern is not one of thoughtless, hurtful, selfish and showing a lack of compassion or concern.

If those who know you best, are asked about the pattern of your words, what would they say? Would they say that you are a hypocrite and they do not receive the kind words you always have for others? Would they say that you speak one way and live another? Would they say that you rip up and criticize and destroy everyone around you? Would they say that you tell the truth? Do you make promises you don’t keep? Are your words hateful? Grouchy? Short-fused? Negative?

It is easy in a world where people only see the superficial, to give any appearance I want. This is one reason we all get annoyed with politics. Everything looks so good…until the dirt follows! I don’t know about you, but I don’t want any dirt to follow in my life.

Our words will either speak life, or they will speak death.

They can either build up and strengthen your relationships, or they will kill off and destroy your relationships. Our loved ones know it the best – no matter what show we give to others, or excuses we like to embrace.

These past couple weeks, have been a living lesson to the power of words. Words uttered in anger, words uttered in haste, words uttered without any regard to the feelings of those you speak them to…have long-lasting, negative consequences. As the speaker of words, that we alone are responsible for, we do not like the consequences. Yet, consequences ARE out of our control. Once you say it, it is very, very hard to take it back.

I want to speak life. I want to bring smiles. I want to help guide truth with loving words. I want to use my words not as a sword to kill something off a little bit more inside those around me, but as a salve to help soothe and heal. And, if in those moments, I feel that I just will not be able to control my words, I will remember that is a big lie and I need to just put my hand over my mouth or remove myself from the situation.

May God help us all to speak life, and not death, with our words.

Important Note – If you have someone in your life that is mean with their words, I would recommend that remove yourself from their presence. If they will not stop when you ask them, then go to another location yourself. It is not “spiritual” to have to listen to them yell, accuse or insult you or your children. You do not have to answer or be pulled in. This is VERY hard to do, but it is very important.

Also, I would highly recommend the writings of Leslie Vernick and David Cloud and John Townsend. They have written several books about emotional abuse and boundaries in relationships. I have read, been helped and highly recommend these authors.

In celebration for my husband’s birthday, we told him to pick the movie of his choice that we would watch together as a family. He pulled out an old John Wayne war movie. In this movie, the enemy planes were bombing a children’s hospital. The nurses were holding and calming the children as they all huddled under beds. You could see the fear in the eyes of the adults as they calmly told the children it would be alright. The children found comfort in the strength of those stronger adults.

I started thinking how it is our duty in life, as the adults, to be stronger for our children. When the scary noises happen in the night, it is our job as adults to comfort those little ones. When they are sick, we soothe and tell them they are going to be okay. When the thunder is cracking and the lightening flashing, we calm them by teaching them weather and keeping their minds busy with science and not fear. This is so easy when we think of it in this way – an adult soothing a child.

But there is so much more where the strong should help protect the weak! What about the stronger kid sticking up for the kids that are bullied? What about the speaking up for the woman who is being verbally or emotionally abused? How about the child with special needs that is getting ignored and sidelined? How about someone who is racist and cannot love someone of another color? How about the unborn baby, still helpless in its mother’s womb? What about the disabled who are not strong enough yet to speak up for themselves? What about the elderly who can be killed off so that they will not put a burden on their families? I could go on and on!

You know, in most of these areas, we let the weak win. It is a weak person who would pick on the weaker or different kid in school. It is a weak man who would hurt a woman in any way. It is a weak group who cannot see the value that special needs kids bring to life. It is a weak person who would judge a person by their skin color. It is being weak to not speak up for those who are either too young, or too hurt, or too weak to speak up for themselves. It is weak to trade the life of any human for the “easier” life of the strong.

We have become experts at finding reasons to say nothing. Absolutely nothing.

“I would like to defend that kid, but then the bully might pick on me, or the other kids will think I am stupid for defending the totally not cool kid!”

“I don’t want to say anything, because then he may just make her life more miserable.”

“I would like to go talk to that mom of that kid, but I would not really no what to say. I hope they find a way to be included.”

“Well, I’m not racist, but that person is so vocal about it, I don’t want to rock the boat or make them mad or anything. I have friends of different colors so I feel pretty good about it.”

“I know people that have had abortions. I don’t want to upset them. Maybe they are just little blobs with no feelings and it really is okay. And what about women that have been raped? We need to think about them! They should not have to deal with a child on top of everything else. I have decided this is how I will think about this. It is much more comfortable.”

“The disabled? Well, my goodness, they get all they need from the government. Do you know how expensive it is to put in ramps or accessible restrooms? I am not trying to be mean or anything, but I mean, we can’t redo everything for one person! I am sorry they are missing out. Maybe they should find a hobby they will enjoy.”

Am I being extreme in some of these excuses? Maybe. But you can fill in your own blanks as you think through every single example I gave, and what would your answer be? If you answer anything besides being strong and defending the weak, then you are shirking your duty as a human being.

I cannot state this strong enough.

I cannot, or will not, defend ANY weak, if I cannot or will not defend ALL the weak.

Who gets to decide the value of strong vs. weak? People like Hitler? He didn’t like Jews…or the disabled. He had them killed! Do we let him decide the value of humans? What about the Muslims? Should we allow them to determine the value of women…or little girls who get married off as children? What about the sex slave trade? Should they choose the value of children? What about the bully? Does he decide the value of who should get picked on or not? What about the medical field? Do they get to pick when you should live or die? Is it okay just because you are still inside a body instead of outside of it? Do they get to decide when the elderly will be more trouble than worth? Do they get to decide because you have broken your neck and they do not think you will have much value in society anymore so they choose not to save your life in trauma? We are okay with some of that, and are appalled by others! Why?! Because we have let others decide and TELL us the value system we are supposed to follow – this sliding scale of value – that picks who the weak are or who the strong are. The evolutionist, Charles Darwin, called it the survival of the fittest. How terrifying is that?!

Are we sure we really want that? I am SO sympathetic to that woman who has been raped and now has a child that will enter the world. But why, of why, would we, as stronger adults, determine that the value of that mother is MORE than the value of that child? I have never been able to understand that. Before you get offended at what I am saying, here me out.

I was not in a rape situation, but when I became paralyzed, the option of treating me taking a priority over the safety of my baby was definitely on the table with my medical doctors. “We need to take this baby at 20 weeks, so we can treat you aggressively so that we can fight off this paralysis as much as possible.” You know what was at stake? Asking my baby to be strong for me. NO way. I would rather be paralyzed the rest of my life, than to risk the health of my little weaker baby. That is my duty. So, I get it. I really do. I get the hard decisions. I get the decisions that will very likely affect the rest of your life. I get not being asked to be put in this position and having to make these decisions. But life…all life…has the same value. Plain and simple. It is all on the same even line. There are no “more valued life” choices. To believe otherwise, is to ultimately put your own life in jeopardy as you wait until someone now views you as the lesser one! 

I am a believer in God. As a believer in God, I know that every single life is important to Him. Anything that evil wants to through our way, He can restore it and make something beautiful out of it. Mostly, I am so thankful because His value system is not ours. He doesn’t pick the strongest or the most fit or the toughest. He actually says that it is in our weakness that He can use us. And it is through that, we are strong. That comforts me.

Because of who I am in Him, I am one of the strong. This gal sitting in a wheelchair has value. I am strong because of all of my million weaknesses. Because I am one of the strong, I have a duty. A duty to take a stand for the weak.

• Because I am strong, I will defend the bullied. But, I will also reach out to the bully because he is also weak and needs help.
• Because I am strong, I will speak up against marital abuse. I will help hold the hands of those who are afraid to move alone. But, I will also help those abusers and rescue them from themselves before they destroy their lives.
• Because I am strong, I will include all children. I will encourage all children. I will love all children. My family will make a point to love and include and invite all children. But, I will also encourage other families to do the same! Get to know, understand, cheer and come alongside those you do not understand. Then you will understand.

• Because I am a strong person, I will see people as God sees them. Not as a skin color, but inside their souls. But, I will remind those who are looking at all the wrong things to get their focus where it should be.

• Because I am strong, I will never stop speaking up for those precious little babies inside the womb. I will never forget feeling them kick and only being separated by a few inches of my flesh. They are alive. Inside my body where once again, my strength keeps their weak and growing bodies alive. Those babies will grow up and thank you for being stronger for them…even though you felt so very weak. My son loves me to tell the story how I chose him. But, I will never stop trying to reach out in love to those who are considering an abortion because they feel they have no other options. There are options and because I am the strong one, I should be there to help walk them through this valley.

• Because I am strong, I will speak up for the disabled. I will help them in daily matters of life, political policy, and unfair treatment. But, I will also speak up to educate, inform and make aware the realities of life so that others can be strong for them also.

This world needs strong people. We need only one reference to decide the value of humanity. For me, the Creator of life has already set that value in place. I will agree with Him.

Because I am weak, God uses me to be strong. Will you let Him use you too?

Paralysis is a weird duck. I say, “Oh I can’t feel that” when I shut my foot in a door, but then I turn around and talk about nerve pain and how awful it can be. Weird right? Right. It is the complexity of our nervous system and the signals that get damaged or not.

These past few weeks have brought several stories along my way. One story is of a friend who fell out of his chair and broke his hip. Another story is of a friend who has been newly diagnosed with MS and is adjusting to zero energy, changing numbness and pain. Another story of a friend who is in chemo for lymphoma and contracted Transverse Myelitis. She is dealing with adapting her home to a wheelchair and all the side effects of paralysis. Then there is my sweet friend whose brother was just diagnosed with ALS and already losing the use of his body.

What do all of these stories have in common? Pain. Lots and lots of pain. Gut-wrenching, breath-taking, heart-sobbing pain.

Pain is a horrible and a wonderful thing. There are times when I am glad I cannot feel certain pain. I have spilled boiling water on my legs and never even knew it until I took my clothes off that night and had blisters. However, I get intense nerve pain in my back and legs when I do not have the right cushioning under me or when I have been in one position too long. When my nerve pain ramps up, I know that I need to reposition so that I will not get a pressure sore. Not having pain is nice, but having pain is helpful. 

In all of these stories among my friends these past few weeks, I have felt their pain. It hurts me to know they are hurting. So does all of this pain have a purpose? I believe it does.

My friend who broke his hip, is the guy who gave me my power chair. He gave my friend that has TM and is weak with chemo a power chair. He is preparing a power chair for my friend’s brother who was just diagnosed with ALS. He has been a quadriplegic for a long time and even with his broken hip, he is still helping others. Has his pain had purpose? Oh yes! And he is reaching to many others in pain.

My friend with MS is turning to the Lord in her weakness. Does her pain have purpose? Yes, it does and will continue to. It is taking her to her source of strength.

My friend taking chemo and dealing with her new life in a wheelchair on top of it? She has a smile that will light up a room! She knows the Lord is doing His work in her life. Does her pain have purpose? Yes, it does. It is a discovery that she will continue to make on her new journey.

My friend whose brother was just diagnosed with ALS? Her brother said, “If I win, I win. If I lose, I win.” He knows that his pain has purpose and he is looking unto Jesus – the author and finisher of his faith. My friend is strengthened by his strength in his pain. And her pain is bringing her to a new depth in her faith and walk with Christ. One that we do not choose willingly, but one that takes us in the very steps of our Savior as He has walked it before us. That path brings us closer to our precious Lord. We come to know Him in the fellowship of His suffering and that has great purpose.

Pain does have a purpose. Pain lets us know where things are wrong so we can make them right. Pain lets us know we need a doctor so we find the Great Physician. Pain brings us to the end of ourselves so that we look at Him.

Physical pain, emotional pain, spiritual pain….they all do serve a purpose. Some day, my friend, all pain will be gone. But until then, may God help us to see His purpose in our pain! 

“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.”

Revelation 21:4

  
Today is seven years since I woke up paralyzed. It is hard to believe. In some ways, it seems just like yesterday. In other ways it seems like it has been a lifetime! 

It is funny how time is. They say time heals every hurt. I am not sure that is true. I believe healing can still leave scars. However, I think that as time moves on, what was once your “new” normal becomes more normal. It doesn’t feel so new or raw anymore. I believe that is where I am now. 

Jimmy and I were married 10 years with me being able-bodied and we have been married seven years with me in a wheelchair. We still have things pop up that are problematic because of my disability, and we have to work through it as a couple, but overall, my disability is not raw or new in our marriage. My younger children don’t even remember me ever walking so I am a totally normal mom to all of my kids. So, no raw or new normals there. My friends have all been around me and spent time with me and I don’t feel like an odd duck anymore with them. Totally normal now. Although there is still a pain in my heart that has never gone away when I miss my walking days or when I get frustrated or feel bad, my life feels very normal. Time is a big part of that.

Today, on my anniversary, I am speaking to a group of women who have been diagnosed with MS. The University of Tennessee Hospital in Knoxville, TN contacted me about speaking a few months ago. When they told me the date, I paused because I knew it was my anniversary. Would I be able to give them my best? But then I thought what a great way to spend this day – trying to encourage other women who are on a similar journey as mine. Although I do not have MS, a life-changing diagnosis is shared by us all.

So, today as I am entering my 7th year in a chair, time has been good to me. I am so thankful for every physical ability I have. I am thankful for the beautiful gift of life every single day. I am thankful for my husband’s love and faithfulness to me, my children’s sweet hearts and happy faces, and for my friends and loved ones encouragement and friendship. I am thankful for the opportunities God has allowed me to be a part. My life is full and precious. I am not sad today. I am grateful. I am happy. I am encouraged. I am at peace with my life. I am excited about the future God has for me.

In our world, many of us call this day our “Happy Alive Day” because if we are alive with spinal cord injuries it means we are survivors. It is a day to remember and be thankful. I am not only happy to be alive, I am very happy with my life.

Thank you for sharing my journey with me!