SCI Awareness and Secondary Conditions

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I remember early on in my spinal cord injury, one of my doctors said “You know, people with spinal cord injuries really have a pretty normal life expectancy that is comparable to everyone else!” Since I was already pretty traumatized and not sure I was going to even live another year, I thought, “WOW! That is wonderful news!! I think I might make it!!” Then he said, “It isn’t the spinal cord injury that can kill you, it is the secondary conditions.” Dejected, I immediately went back to my former thinking that death would be soon!”

As comical as that story is to me, there still is truth in it that you would be a fool to not be alert and attentive to. But…what are those secondary conditions that can get you? Let me list them for you (with a very brief description)…and if you are SUPER curious, I will add a link that will list more detailed information on each of these.

  • Autonomic Dysreflexia – this can happen to anyone with an injury level of T6 or higher. Any problems your body feels (shoes too tight, sitting on a wrinkle, mosquito bites (yep, really), bladder or bowels too full, or just anything where your body is uncomfortable but you cannot feel it….affects your autonomic system and it reacts. Bad headaches, goose bumps, sweating, breathing difficulties, spasms, stuffy nose, and the most scary is that your blood pressure can skyrocket to where you have a stroke or heart attack. It truly can be life and death to figure out what is going on with your body and get it feeling better so you don’t die.

 

  • Bowel and Bladder Management – this is unique to each individual how to maintain an efficient and healthy bathrooming program. Urinary tracy and kidney infections and bowel impactions can land you in the hospital very ill and lead to sepsis quickly. It takes time and a lot of trial and error and it doesn’t take much to throw it off, but this truly is an area that you cannot afford to be vigilant on because it can cause a LOT of long-term health complications that could lead to an early death.

 

  • Deep Vein Thrombosis (Blood Clots) – the lack of mobility and decreased circulation that comes from a lack of movement places us at a much higher risk of blood clots. Since many lack the pain sensation a blood clot would trigger, you must be vigilant and keep an eye on any unusual swelling or heated areas.

 

  • Respiratory – for those with higher levels of injury, the respiratory system is compromised. Some will require the use of a ventilator long term, but even those who don’t, are still compromised. Because your diaphragm, intercostal and abdominal muscles are paralyzed, it can be very difficult to inhale or exhale with much strength. Coughing, talking loud, and even breathing deep require much more work. For me, I cannot get the volume or hold a note very long at all anymore. I also get very dizzy from a lack of oxygen if I sing with everything I have. This all varies in strength according to each individual and their injury.

 

  • Skin Care (Pressure Sores) – Our body is layered….bone, which is wrapped in muscle, coated with a layer of fat and the all covered up with our skin. When your muscles are paralyzed, those muscles all shrivel away and what is now left is bone on a layer of fat covered by skin. Truly, the more fat layer you have, the more padding it does help to give you from bones killing off the blood supply to your skin which makes your tissue die, which is exactly what a pressure sore is. They begin with a red spot and can QUICKLY crater into a horrible mess…which means you are stuck in bed until it heals….which can take months and month. Being vigilant is an absolute in this area! Checking your skin daily is imperative to stay ahead of this.

 

  • Spasticity – Spasticity can be either stiffness or your body jumping around in spasms. Many times it will be a combination of both.This is another area that you must learn your body. It is absolutely affected by weather, stress, sickness, positioning of your body and can also be a sign you are having an autonomic dysreflexia episode. Increased spasticity can be a warning signal that something is wrong and you need to figure out what it is. (broken bone, pressure sore, UTI, etc.) Once my spascticity was horrible for about 3 days and I found out my left hip was completely out of socket. I felt no pain but my body let me know. It is important to know what your “normal” is so you will know when something else is going on.

 

  • Sepsis – Sepsis is deadly and one of the main killers of those of us with spinal cord injuries. Sepsis is blood poisoning from an infection most likely to come from UTI’s (which can be very bad before we even know we have them because we do not have the pain and symptoms others have), pressure sores (open wounds are very susceptible to infection anyway and pressure sores go all the way to the bone), and pneumonia (from a compromised respiratory system). It is better to go to the hospital for 10 false alarms then to mess with becoming septic.

I know this all can sounds terrifying, but this is the reality of having a spinal cord injury and the high risk we have of these other complications. Knowledge is power and it is better to arm yourself with what you know could be, so you can prepare so it will not be.

Thank you for learning!

Here is the promised link for more information:

Secondary Conditions Page from the Christopher and Dana Reeve Foundation

 

SCI Awareness…”I never knew…”

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Today’s SCI Awareness post is written by my friend Roberta Noack Palmer and shared with her permission…

There’s so much more to a SCI than just not being able to walk. Until I joined this club I had no idea of what life would be like living with a spinal cord injury (SCI).

*I had no idea I’d be using catheters and have a bowel program.

*That I’d have to check my skin constantly. I had no idea that I would not be able to regulate my temperature or that my blood pressure would take dips so low that I have to have my legs raised.

*That I’d always have pain.

*That I’d have to take medication for spasms for probably the rest of my life.

*That I’d be dealing with the never ending maintenance of my body just to stay healthy and alive.

*I had no idea of the frustrations I’d feel because I couldn’t do something but also the patience I had to learn because of this.

*I had no idea I’d have to preplan everything…from booking a flight or hotel room to tickets for an event. Then crossing my fingers the preplanning was successful.

*No more being spontaneous. Always having to have a plan B or C or D.

*I had no idea it would be so hard to find a parking spot to let my ramp down just to get in and out of my van.

*I had no idea people would stare at me like I have 2 heads or pray over me while in a Costco.

*I had no idea there was a rehab hospital that would teach me how to live with my paralyzed body.

*I had no idea that I had the strength and will to figure out my different way of life.

*I had no idea that my family and friends could support me the way that they have and do.

This is what it’s like living with a Spinal Cord Injury.

September – Spinal Cord Injury Awareness Month

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I have decided this month to operate backwards and instead of blogging and sharing on Facebook, I am going to post on Facebook the things I want to say about spinal cord injuries this month and copy them over here to organize them. So, if you don’t follow me on Facebook, you will still find the things I am writing here. I am also going to stay current on this particular page to link every single thing I write this month in this post. That way, they will all be in one place.

  1. Spinal Cord Injury & Emotions
  2. Spinal Cord Injury & Weather and Pain
  3. Spinal Cord Injury…”I Never Knew”- Guest post by Roberta Palmer
  4. Spinal Cord Injury & Secondary Conditions

SCI Awareness – SCI & Weather & Pain

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Spinal Cord Injury, Weather and Pain…

I’m sure you already understand the connection between weather and pain if you have any sort of old injury (knee, hip, ankle) that you can feel acting up when it rains. What is that all about? Is it the actual wet water…or the change in barometric pressure that happens with changes in weather systems or is it just a crazy idea altogether? I don’t know the scientific answer…but I can only tell you what I think that my own body answers.

I had an old knee injury from a car wreck in college that would always bother me when it was going to rain. Now that I am paralyzed, that knee pain never bothers me anymore. The change in barometric pressure will affect a weak area in your body.

The weak area in my body now, is a damaged spinal cord…at a pretty high level. My spinal cord was damaged at the C5-C7 vertebrae level (which are located in your neck). If you know the spinal cord, you also know that nerve roots go out from the level on your spinal cord to the parts of your body to control the body’s movement and sensation. So, if the spinal cord is now damaged, when the barometric pressure changes, it can really wreak havoc on your parts of the body that those nerves connect to.

The logical question is then, “how can you feel anything if you are paralyzed?” That is a great question and the simplest answer is that I don’t “feel” normal, but I DO feel a LOT! I can’t feel touch or any normal sensation, and I can’t make things move, but every time my brain sends a command down my spinal cord to even try to figure out what is going on, it hits that damaged spot and just goes crazy. So, I have a ton of nerve pain that expresses itself in my body as lightning bolt pain (a quick jolt that runs through your body and takes your breath away), as extreme burning pain (like my body being sanded), vibrating pain (like when your hand falls asleep and it is in that horrible stage of trying to wake up and you don’t want to move or touch it yet), and the your squeezing-me-too-tight pain that feels like someone has wrapped you up way to tight in an ace bandage and their squeezing the blood out of you. That sounds dramatic and graphic, but that truly describes nerve pain that never leaves my body…but are in varying degrees from a hushed whisper to screaming loudly. Because my spinal cord was damaged high, that nerve pain covers my neck, my entire torso, my arms and my legs. Sometimes it even affects the right side of my head. I am an incomplete injury so some nerves are still connected and work to certain areas of my body in sensation and movement, but are left altered in a variation of strength or sensation. More on this later!

On top of the nerve pain all over my body, my working body parts are overused to compensate for the non-working parts so muscles and joints are always complaining about that! More on this later too!

The weather (barometric pressure) changes DO affect the volume of that pain in me. When weather is moving in it is the absolute worst. I feel HORRIBLE about an hour before it rains. Once it starts raining, and settles in, I still feel bad but it is better than before it rains. I feel the absolute best in sunshine and clear skies. So, when the barometric pressure is changing/moving is absolutely and consistently is made known in the levels of all sorts of pain in my body. When the pressure is stable, those are the much better days pain and activity wise.

So, if you are a health professional, or a family member or friend to someone with a spinal cord injury, or even a newer injury, it may be helpful to remember that days the weather is changing are days that you just aren’t going to be at the top of your game and adjust as needed.

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SCI Awareness – SCI & Emotions

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Warning…lengthy post….

With a spinal cord injury, there is SO much physical that happens and takes the front and center in the early days. I won’t even get into that yet. However, as the original shock of it all wears off, and because so much of the physical has changed, the emotional side becomes really huge.

You see the pain and fear in the eyes of those who love you, so you try to hold it together and be strong…for them.

You see how much extra work has now been given to them to take care of all your new deficiencies…and so you try to not to ask for anything more than what you must have to get through a day…for them.

You are trying to figure out how to live in a world not prepared (neither physically nor emotionally) for your disability and figuring out how to navigate always being “the different one that gets stared at..a LOT” and so you sort of learn to look at the ground while out in public…or you try to constantly feel that you have to prove that you belong in society like everyone else and you develop insecurities just trying to live a “normal” life…to help “them” not feel inconvenienced by you.

This is a HUGE blow to your identity, in trying to figure out who you are now, in trying to navigate all the people in your life and finding that delicate balance of still being an individual that now needs help, without losing who you are by being a burden for all the help you now need.

And it takes time…

✓ It takes time to learn how to do more on your own.
✓ It takes time to learn your new normals.
✓ It takes time to accept and then define who the “new you” even is.
✓ It takes time to learn to look up, and meet those staring eyes with a confident smile.
✓ It takes time to be okay that people will never understand unless they live with the exact same things you do every day.
✓ It takes time to learn to just stop explaining and just go on…silently thanking God for them that they don’t have to live with a spinal cord injury and that is why they are clueless.
✓ It takes time to be okay with who you are and who you need to be to just be allowed to be an individual again without hundreds of opinions and expectations trying to tell you how you should best do things now.
✓ It takes time for those around you to either love and accept the new you, or to just walk out of your life.
✓ It takes time you to learn who your real friends are and who loves you anyway.
✓ It takes time to not feel you have to prove you are still capable of so many amazing things!
✓ It takes time to marry the thought that yes, you can have physical needs to be taken care of, yet still be 100% in charge of your care and your decisions and your life.
✓ It takes time to be you again. And if the “you” of today looks and operates differently than the you before, it is totally okay. Life has thrown a rough path your way and you didn’t quit. You kept going.

This process of time is always in motion…with every new circumstance or event thrown at you…you constantly are taken down an emotional path. The cool thing about time is that you have practiced this emotional journey enough to navigate most things much quicker. Like driving these wheelchairs…we were all HORRIBLE at first and barely had the strength too, but give us awhile and we can maneuver them better than anyone else. This is the emotional journey also.

Time is a wise teacher if we will open our hearts and learn.

Lessons God Has Taught Me About Parenting

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Recently, I was asked if I gave talks on parenting. I laughed! Me? I am still learning how to parent and most of my kids are still being raised. I have no advice! I am still in the “I need all the advice I can get” stage. I am the last person that wants to give advice on parenting in any way shape or form! However, I also watch parenting in society, and even in our churches, that leave me scratching my head wondering where they are getting their parenting skills! Or…at the risk of sounding snarky…are they even parenting at all? I digress.The lady asking me asked me to come home and please email her any thoughts I had. Since I had a 2 hour drive after that conversation, I had a lot of driving time to think about this. The following are my thoughts that I have learned in my 20 years of parenting. Give me 20 more years and I am sure I will have learned SO much more! I pray I will have.

HUGE Disclaimer:

I wish I could say I have this down. I don’t. When I can keep Alicia out of the way and let the Holy Spirit rule my life, things run so much smoother. When things aren’t going well, I pull out the mirror for MY heart! These truths are what I know are right – not truths I have managed to live consistently each day. It is my desire to, and so I find myself apologizing a lot to my children and praying often for the Lord to show me my true heart towards them and for Him.

And now…my thoughts….

1. Our Foundation

We often think as parents that we need help with child training when in reality, we need parent training. Many times, children are just mirrors of the home. Because of that, it is vital that we don’t even enter the thought process that we can “train these kids to turn out,” In reality, we can’t. We can only model and pour God’s Word into their lives and pray that the sowing and watering of His Word will bring forth the increase since it is God that brings the increase.

There is no formula that produces godly children. Oh, we may produce some moral heathens, but godliness is a choice that each one of our children must make on their own. Thus it is so important that they see the rawness and realness of the Christian life and what it means to be a follower of Jesus…and that life must be shown to them as worth every single moment…in the good and the bad.There is no way that we can “show” that life and live it as a fake or a facade. Our children see right through us. They will see every glaring crack and they will see every single time we are hypocrites. Since we will be guiding them towards righteousness, they will point out every time we are unrighteous! And…since we will make mistakes…over and over…we must enter parenthood with that clear understanding and humility….that we are ALL (parents and children alike) on the road to being more like Jesus and less like our flesh, and that we are ALL fellow journeyers on this road…ALL disciples of Jesus Christ to continue maturing and learning and growing. We need to admit to our children that just like them, mommy and daddy are also desperately in need of Jesus and His sweet love and forgiveness for when we mess up – just like they are. And that we do NOT have all the answers nor do we pretend to have it all together. But that together, we will all go to God for our help…a very present help in our time of trouble,,,and that we will seek His Word and His wisdom to guide us as parents as we help guide them as children.If the foundation is not Jesus….for ALL of us…we are already setting ourselves up for failure because there are no perfect kids, and there are no perfect parents – but there is a perfect Savior!God is the perfect Heavenly Father and if we could all parent like Him, we would feel so good about this all! He is our example, and while we are not perfect like He is, He does model godly parenting that we can learn from.

  • God gives unconditional love.
God has loved us first (like we have our children), God has loved us without conditions (He created us and has a plan for our lives since conception) and it is His will and desire that none perish but all come to Him. His love is not moody like ours, nor is His love based on how we treat Him. He is the same yesterday, today and forever. He never squabbles with us about His role as our Father. He just is. He is confident and stable in His position to our lives. We are the ones that get bigger than our britches and have weird emotions with Him. But our wild mood swings and temper tantrums don’t phase Him. He just deals with us with a perfect love that is always balanced in His perfect truth.
The practical application can be seen in our homes. Many times, our great insecurities in our role as parents leave our children on a roller coaster where sometimes we are the big bad boss yelling our commands and wanting obedience while we count to 3…or 20…., other times we are soft teddy bears wilting at their tears, or we are just so weary we give in to their constant begging and pleading. We go back and forth and our children really never know “what” parent they are going to get today because we are so easily swayed by our emotions.This ought not to be so. We need to look at our children through eyes of love that asks what they truly need…not what they want (they don’t even know half the time). We need to rest in the fact we do know what they need as the mature adult and make our decisions known to them – not with anger, but assertively and confidently in the authority and trust that God has placed us in for their well-being.
Example: “Mommy, I want some candy.”
Do they need the candy right now? Is it best for them? Do you want them to wait until after supper? What is the right thing for them. Then answer with confidence and assurance that you ARE loving them by acting according to what is best for them.God always chooses what is best for us. We don’t always agree or like it, but it does not change the truth that He abides in. It is in His great love that He does NOT give me my way….for that would not always be what is best for my life. It is a wise leader who will walk in truth and not be swayed by emotion. Emotion makes a wonderful caboose, but a terrible engine. Keep them in their place.
  • God gives choices and consequences.
God says that He sets before us life and death…so choose life! As a parent, there are certain things that are non-negotiables in our house. As they leave our home and live in their own, they may not make choices that we have. However, as long as they are under our roof and we are paying their way, there will be non-negotiables. These are the choices we are making to do in our home, and if you live in our home, this is what you will do. If you choose another way, and you may, but the consequence will not be to live in our home. This is referring to being over the age of 18. As long as they are minors, they don’t even have a choice not to. I have been shocked by church members I see that give their 14 year old children the option to attend church or not. They come and ask prayer for their children to attend church, yet they don’t make them. Mind blown.
How do choices and consequences work in younger kids we are trying to teach this God principle to?“Johnny, I would like you to clean your room thoroughly this week. I don’t care what day you do it, but it must get done this week.” So Johnny procrastinates (as most Johnny’s do) because that is just not his thing. He keeps putting it off and he really does forget. So, now that it is the weekend, Johnny wants to have a friend come over or wants to go over to the friends house on Sunday afternoon. What do you do?
You help Johnny understand choices and consequences. You gave Johnny liberty in the when, but you were clear on the what. If Johnny did not do what you asked (even if he really forgot – which he really didn’t forget…he kept putting it off….which is procrastination…which is a bad character quality…so many parenting opportunities here), you ask Johnny if he cleaned his room. When he says “No, I forgot all about that!!” You say, “I hate that you made that choice Johnny. I know that I was clear in what needed to be done and my responsibility is to communicate clearly, but it was your responsibility to remember. Since you didn’t, I have no choice but to say no. You aren’t going to be able to go or do anything else until that room is clean.This may seem like such a silly exercise, but it is SO easy to just let these things go and we are not helping our children learn accountability, or character, or work ethic, or personal responsibility, or anything. 90% of us will know we shouldn’t let him go if he didn’t do it, but Johnny’s begging and promises to do better next time will have most of us caving. And you know what we taught Johnny? We taught him that our word doesn’t have much value, and that his bad choices don’t have any consequences. Scripture is FULL of God telling us our choices and setting before us the choice and path He desires for us to take, and Scripture is full of stories of many who disregarded His words. But let’s not forget that Scripture is also full of many examples of the consequences that were given to them because of their choices. So, we must NOT let that lesson slip past teaching our children these very serious truths.
  • God is a God of grace.
Our children can never understand grace if they do not understand consequences. Grace is God giving me what I do not deserve. It is so important for our children to grow up knowing that the world is not about them. We are to love and serve one another. We are to prefer one another. We are to submit to one another. We are to be kind to one another. We are to not only love our enemies, but are to do good to them in return!There are two life views…one looks in a mirror and only sees themselves. The other looks in a window and although he can see his reflection, it is a part of the world outside. Our children need to know they are fearfully and wonderfully made! God has knit them together in our wombs for their work in His kingdom and for His glory. Sin knocks that plan in the head and so our children need Jesus to follow Him for the purpose they were created! It is a glorious calling, and they cannot know that they are hear to serve Jesus, if we make life all about them. We love them unconditionally, we encourage good choices and have consequences for bad choices, yet we also must help them see their place in life. To do good, to love others and to be servant leaders in the kingdom of God.
These opportunities will arise all throughout their childhood….from every friendship that they get hurt in, every conflict they are engaged in, every rotten attitude they partake in, every sin they are enticed by….over and over and over we have opportunities to share the power of Gospel – not only for our home in Heaven, but for our presence on Earth.
The very best we deserve as sinners, is hell. That is the consequence I deserve. Yet God, in His amazing grace, took that punishment for me and gave me life. When I receive that gift of salvation, it is a heart of gratitude…and knowing what I deserve….that should put my heart in a humble position that compared to hell, nothing I will ever endure or go through is as bad as that. That heart gratitude keep me from being a “victim of life” and instead keeps me victorious in Jesus! THIS needs preached to our children! Children!! Jesus loves you so much, He took what we deserved. Because of that great love, we love. We love first in our home, and we love others outside of our home. By this shall others know you are my disciples….IF you have love for one another.
Once we have this understanding as our Foundation of thoughts….we can now move on to what this looks like in our homes as mothers….
2. Our Families
They say that more is caught than is taught. I don’t know about that, but Scripture does tell us that our life is like a book and it is being read by men. Since that is true, then that means the first people that get the first edition of our lives, is our families.
Our families know the real us. They know our hearts, our attitude, our desires, our like and dislikes. They know when they get on our nerves. They know if we really like them. The question is….if your family is reading the story of Jesus in your life, what would they think of Him? If we gain the whole world (which we project to them what we want them to think of us), yet we lose our own soul, what good is that?
Likewise, if we give everyone the good Christian impression…except for our families…are we frauds? I am a failure as a follower of Jesus if my own family cannot see Him in me first. So many times, we spout the right words to our children yet we model just the opposite.
“JOHNNY!!!!” we scream. “I HAVE TOLD YOU 20 TIMES TODAY TO BE NICE TO YOUR SISTER!!! I am sick of telling you this!!!”
What we said was to be nice. What we screamed was that we are being ugly while telling him to be nice. We are hypocrites. He knows it.
We say to our husbands…”Ugh. I hate how I look. I look like a fat slob and my nose is too big.” He says, “Honey you are beautiful!” You say, “Stop lying.” Our daughter comes and says (at 12 years old), “I am fat and ugly.” You say, “You are NOT!!! You are beautiful….just the way God made you!” She doesn’t believe you believe that….and neither will she.We want our children to have a personal relationship with Jesus. We want God to be real to them! We want them to love God and not rebel against Him, yet, how often do we intentionally talk with our children about God. When do we pray over little things with them? When do we stop throughout the week and point out things in nature or life and draw a spiritual truth for them? Jesus was ALWAYS pointing to nature to teach his truths (the olive tree, the vineyards, the fig tree). How often, in our daily lives, do we just add a sentence or two about God and His goodness? Do we make God personal to our children? Do we walk in God’s truth? Do we live in the light of who we are in Christ and that WE…as women…are strong and beautiful daughters of God? Do we grumble and complain and gripe and gossip? Do we daily have the joy of the Lord as our strength or do we play the martyr card that our lives, our marriages, our church, our kids…are all just straining and stressing us to the max….and we just need a break! A break….from the precious family that God has given to us because He knows that we, as mothers, have the strongest influence on our children.
Our lives are telling our children a story about God. What story is it telling?
  • That God isn’t really a big deal in our daily life? If we never make Him daily, that is what we are saying.
  • That God doesn’t know what He is doing in my life? When we grumble about every trial that is what we are saying.
  • That God made a mistake in me? That is what we are saying when we complain about our bodies.
  • That God isn’t enough to fulfill me and bring me joy? That is what we are saying when we allow any circumstance (from minor to major) rob us of our joy.

Do you see how major this is? This is not “how to train my children.” This is “how to discipline myself in truth” with God as the foundation leading us in truth and humility and showing us the way as our example.

Our families are the only possession we will ever have on this earth that we can take to Heaven with us. They are the greatest mission field. They are the greatest investment we can make with our lives. They are pieces of us that will continue on after we have gone. Our children are not a status symbol. They are not a “thing” on the American way of life checklist. They are living souls. They need Jesus. They need discipled. They need us to lead the way, and like Paul said, our prayer should be that they follow us as we follow Christ. And let that also be a warning to us…they may follow Christ as they see us follow Him…which could be really lousy if we are not serious disciples and followers of Jesus Christ.

Does this all sound really complicated? It isn’t. Walk humbly, seek wisdom moment by moment from God, grow together with your children, and constantly point one another to our sweet Jesus!
Does this sound time consuming and intentional? Yes, it is. But, their lives are worth every single moment of it!

10 Years Rolling Today

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10 years…a decade…1/4 of my life…these definitions of time…all rattle me a bit! Today is the day that these thoughts haunt me a bit and at the same time make me feel so very thankful. It is an unusual cocktail of emotions that the anniversary of me waking up completely paralyzed leave me with.

I write to remember. I write to reflect. I write to make all the swirling thoughts in my head and the emotions in my heart to make sense and be right.

I feel that my life is divided into before paralysis and after paralysis. It feels like two completely different worlds yet they are connected. I feel that I am two different people at times! The Alicia before…and the Alicia after. It really is a weird feeling.

As I think about the word “sanctification” and in its simplest form means “more of Jesus and less of Alicia“, I feel that perfectly sums up the transformation in my heart and life…physically, emotionally and spiritually. As crazy as it seems, becoming paralyzed has been the greatest catalyst for this work of sanctification that God is working in my life as I journey with Him on this earth. 

  • 10 years ago…I thought I was at a strong spiritual place. Paralysis taught me I was NOT and how very weak I was.
  • 10  year ago…I thought I was confident in who I was as a wife and mom. Paralysis taught me my identity was not where it should be.
  • 10 years ago…I thought I knew what my future would look like. Paralysis taught me to live today because we have no clue about our future!
  • 10 years ago…I was concerned and worked up over little things. Paralysis taught me to let the little things because they are truly nothing in light of big things.
  • 10 years ago…I thought I would be all better and back to normal. Paralysis taught me patience and how to live in a body that I have no control over.
  • 10 years ago…I was content in being told what and how to believe about things and just recited so much of God’s Word. Paralysis taught me that puppets are not real and that I needed to know my Creator and His relationship in my life.
  • 10 year ago…I hardly knew anyone else in a wheelchair. Paralysis has taught me of the sweet bonds of friendship that can be found in relationship with others who live life just like me.
  • 10 years ago…I wasn’t sure if this would destroy my kids and if I could even help them grow up. Paralysis has taught me that a disability in itself has been a wonderful teacher to my children in how they view and love others with no reserve.
  • 10 years ago…I wasn’t sure my marriage would make it or if my husband could hack this new life. Paralysis has taught us both that a marriage with a disability is really tough, but true love sticks it out anyway…and loves and forgives and learns and cries and gets angry and fights and loves and forgives and learns….all over again.
  • 10 years ago…I thought my friends might go away. Paralysis has taught me that true friends love you no matter what.
  • 10 years ago…I thought my work in ministry was greatly diminished. Paralysis has taught me that my ministry didn’t diminish but now expanded to understand a whole new category of life.
  • 10 years ago…I thought I knew how to pray. Paralysis has taught me that prayer is crawling right up in the lap of Jesus as His girl…and just sharing my heart….whether broken, crushed, hurting, terrified or celebrating…and feeling His comfort.
  • 10 years ago…I wanted answers to so many things. Paralysis has taught me that finding the answers to my questions aren’t necessary, but that looking unto Jesus….Who is the Answer…and just trusting His work in my unanswered questions is where contentment and peace is found.
  • 10 years ago…I honestly never thought I would be here today.  I never thought I could ever live paralyzed for one year….let alone 10! Paralysis has taught me many surprises and that yes, life does go on, and is good!

Less of Alicia? Yes!! I have SO much of Alicia left, trust me, and I know God will keep doing His work in my life, but I can most definitely see over the past 10 years of God removing me piece by piece.

More of Jesus? Oh I pray so! I definitely believe that being open to His work in my life leads to the Spirit of God having freedom to work. I believe that less activity leads to more time to dwell on Him, to abide in Him, to think on Him, and that my lack of movement has brought me running into His arms in prayer and need of Him. I think that is why so many people with disabilities in the NT were so open to Jesus. They knew they lacked and were needy and He was there for them! I am fiercely independent, but I am not without much need. He has been there for me and I believe that hearts of gratitude are hearts that follow after Christ.

The longer I am paralyzed, the more I feel paralyzed. Physically, I am aging with a severe disability and it is very much felt every single day. Pain, spasticity, and less function are daily reminders that our physical bodies, our outward man, does perish. But I LOVE this verse, “For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day.” II Corinthians 4:16 I truly feel this. I feel the outward man perishing. Every year it feels that my C5-C7 incomplete spinal cord injury is becoming less incomplete from just wear and tear and overuse. It has been lifestyle changing and I have had to deal with the emotions that come with even less ability as I know the reality of the next 10 years on my body. But…my inward man is so happy in Jesus. I am so at peace with my limitations. I can get frustrated…and agitated…and grumpy with constant pain…but the Lord gives me a good talking too, and off we go with a new day…new mercies…and His great faithfulness.

Yesterday, my family took me out on a special day to just enjoy being together and we celebrate life together. While driving and talking, one of my older children said, “I wonder what our lives would be like if Mom had never become paralyzed?” My youngest child quickly answered, “Miserable.”

Y’all….that is ALL Jesus!

Thank you sweet friends for your love, support and encouragement. May the Lord continue to work in this family to be less of us and much, much more of Him!