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.

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

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.

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.

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.

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!

Holly & Alicia – April 2018

In this season of being thankful, I find myself thinking back over the major transitions that have happened in my own life in the last two years. Since the age of 19, it had been in my heart to travel and share the Gospel, but growing up as a diehard Georgia girl, I always figured that I would call Georgia my home base. However, in the summer of 2016, my life changed dramatically. After a very painful family conflict, I found myself living in the Carolinas, waiting for my house to sell back in Georgia, and wondering what my future held. I could not see an hour into the future, much less a week or a month or a year.

Over the course of the next few months, I faced an intense internal struggle. I greatly desired to live an independent life, yet I was so dependent upon the help of others for pretty much every daily activity. At 15 months of age, I had been diagnosed with spinal muscular atrophy (SMA), a neuromuscular condition that was predicted to kill me before the age of three. But God had other plans! So now, in my early 40s, I still have to depend on the help of others because my body is weak, but my spirit and my soul are very strong.

But in those first few months of transition, although surrounded by people who loved me and who had chosen to be a part of my life, I still battled my deepest inner fears. What if these people who had so willingly taken me into their lives changed their minds? What if I became more than they wanted to handle?

As winter passed and spring came, my house sold and I moved into the home of my best friend. Her granddaughter had just moved out into her own apartment, and both of us were single and very involved with ministry. It was a good arrangement for both of us. For over a year, I was able to find a new level of peace and rest. During that time, things that had been hidden came to light in the comfort of a place where I was finally safe to let my vulnerabilities be exposed.

I realized very acutely that it wasn’t the physical disability that had been my biggest challenge. Having a significant physical disability is not what causes trauma and suffering. It is only a visible canvas upon which a picture is painted.

See, trauma and suffering are peculiar things. In and of themselves, they are nothing. It is in our response to them that we see what we need to see.

And during that year of growing and healing, I began to see the value of perspective more than I ever had before. What I chose to focus on would become the reality I’d create. If I chose to allow trauma and suffering to paint the picture of my life, I would be handing over the paintbrush to the results of a fallen world. Instead, I had to re-frame the experiences of my life in order to let the picture become a reflection of the One in whose image I was made.

And what could be the key to the re-framing of my perspective? Gratitude.

Being grateful to the Lord for His blessings instead of amplifying my painful experiences was a game-changer.

I began to see the Lord bring miraculous provision into my life. It was so powerful. My friend, Sandy Renner, says it like this: “Faith moves God’s hand, but gratitude moves His heart.”

When His eyes rest upon us and He sees our response of gratitude to Him for His blessings, He is moved. On the flip side of gratitude is a dangerous reality. Romans 1:21 (NKJV) says: “…although they knew God, they did not glorify Him as God, nor were thankful, but became futile in their thoughts, and their foolish hearts were darkened.”

When we do not acknowledge God as God, glorify Him and give thanks, our thinking becomes futile and our hearts begin to lose the Light that His love so freely gives. In other words, gratitude is what helps us think clearly and respond with a healed heart.

So as I continued to grow, that season began to change as seasons always do. Change is necessary to take us to new levels. One level of glory must always yield to the next, but that means we must be pliable in God’s hands. When we remain pliable in a spirit of gratitude, what would have been a traumatic brokenness under our old perspective becomes only a reshaping, and what would have been suffering becomes merely a bend in the road on the great adventure God has planned for us.

Hi, my name is Amy Foster. On April 3, 2015, our family was in a car accident that changed our lives forever. My husband and six small children (8 1/2 yrs. old down to 9 mo.) came away from the accident with only minor cuts and bruises, but my neck was severely broken. I was in the hospital for almost three months before getting back home.

It was hard not picking up where I left off before the accident. For the first two years, I was bedridden due to stage 4 pressure wounds that I received during my hospital stay after the accident. My baby boy hardly wanted anything to do with me for those two years. He would cry when my family put him on my bed. I remember putting a tune to the Scripture verse: “In everything give thanks for this is the will of God in Christ Jesus concerning you.” That helped during some of the more difficult times. Three and a half years later, we’ve come a long way. Garrett (my baby) loves to sit on my lap now and runs to me for kisses.

With each day comes its challenges though, and I often have to pray to God for help and strength. Life is definitely different than it was before the accident. I can’t do the things I used to do. God knew all along my life would change. It is helpful to me knowing God is in control and accepting His plan for me, though I am still learning to give it all to Jesus. I am thankful to know God is forgiving and His mercies are new every morning.

Oftentimes, it is a daily or even moment by moment surrender. I have the choice each day to go down the road of negativity or cheerfulness, discouragement or thankfulness. I have six children watching me seeing the way I choose. They are depending on me. I may not be changing diapers, cleaning the house, making the meals like I used to, but I AM guiding our home and shaping their lives. I am thankful to have the chance to still be able to read to them, pray for them, teach them to read and write, play games with them, hug and kiss them, teach them to sew and bake, and so much more!

God requires of me to give thanks in all things. Even if and when I don’t feel like it, God wants me to be grateful.

It is amazing how much happier I am when my mind is on God’s goodness to me rather than on what I don’t have or how I am feeling. Thinking of others and doing something for them or praying for them is helpful. God has many verses in the Bible that mention our minds and thoughts. It is so important to keep my thoughts pure and clean and right.

Elisabeth Elliot said,“Refuse self pity. Refuse it absolutely. It is a deadly thing with the power to destroy you. Turn your thoughts to Christ who has already carried our griefs and sorrows.”

I find joy now in the things I used to take for granted: being able to feed myself, feeling the sunshine on my face, warm blankets, not having to stay in bed all day, being able to see, read, and write. I am so blessed to be home with my children, watching them grow. I have a wonderful husband who loves and cares for me. I have family and friends who pray for me. God has been so good to me! I pray that I will please God, so one day He will say, “Well done!” We may not understand it all right now, but in heaven it will be worth it all!

__________________________

Read more thoughts on Thankfulness…

Alicia Reagan…Thankfulness In Suffering

It is the season of Thanksgiving…a season that should never stop in our hearts, but is especially celebrated right now! While we work our way towards Thanksgiving, I want to  write on being thankful…especially when you are suffering in life.

Suffering is universal. No one escapes it. We suffer differently, but we all have suffered, are suffering or will suffer. Suffering is hard. Real hard. It can get real ugly. Especially if it doesn’t go away. When I get ill, I don’t like it but I am okay with it for a little while. I will take meds to get me through the worst symptoms knowing that in a week or so, I will be back to my old self. But what about when suffering isn’t going to go away?

How do you “get over” a loved one dying? How do you “get over” your spouses continued unfaithfulness? How do you “get over” your own painful consequences to sin in your life? How do you “get over” a chronic health condition that constantly changes? You don’t get over these kind of things. They are now a part of your daily life.

As we are in this season of thankfulness, I am often reminded in my suffering of this verse: “In every thing give thanks: for this is the will of God in Christ Jesus concerning you.” This is SO hard!!! I don’t FEEL thankful for suffering. I don’t want it. I want to be rid of it. When I think of my suffering being so very daily and never going away, it can consume you and destroy you. But…God didn’t ask me to feel thankful. He told me to BE thankful. Not only did He tell me to be thankful, He told me to be thankful in EVERY thing. What?!!! Then God takes it even farther. He tells us that this thankfulness in every thing is the very will of God for my life.

God’s will…for me today…is to be thankful in every. single. thing. Tomorrow, I do it all again. THIS has me in God’s will.

So how do we do it? How in the world can we choose to be thankful?

1. It IS a choice. Do NOT wait on your emotions to “feel” thankful. Over time, in some cases, you do feel thankfulness. But many times, I cannot say “I am thankful for….” but I can say “Thank you Lord for this in my life because I know You are allowing it for my good.” The longer I live and grow in my walk with the Lord, the more I realize how very much He pulls us away from emotion and to intentional choice.
2. It CAN BE a habit. Over time, this will become a good discipline in your life. If you will just obey this verse, when you suffer, you not only start listing the blessings in your life, but you already say thank you to God for allowing this in your life.
3. It WILL BE rewarding. The point is not so we will eventually like suffering. That will never happen! The point is so that we will learn to obediently live in a thankful heart to God for every single thing in our life because He has already ordained it to be so…for His purposes and glory through our lives.

I will have two guests in the next week who are going to share their stories and God’s goodness:

• Amy Foster – a precious wife and momma that was in a car accident that left her with a serious spinal cord injury.
• Holly Payne – a sweet friend who has a condition called Spinal Muscular Atrophy that doctors said should have killed her before the age of 3.

Both of these godly women have chosen to be thankful in their lives and I think it will be a blessing to you all, as it has been to me, to read their stories. I can’t wait for you all to meet them. So stay tuned!

This year has been a year of learning for me. Obviously, when I became paralyzed my whole world was turned upside down as Every. Single. Part of my life was affected. But…over time, you find a new normal…until your spinal cord injury plays a trick on you and decides to add more changes! That has been what I have been dealing with for over a year now with less function, and much more pain and spasticity. I have already written about this several times over the past year and I am not going to again, but what I want to write about is how to handle it when your world squeezes you just a little tighter…and you feel like you can’t quite catch your breath. When your normal…isn’t normal anymore. Maybe your health is declining…or you are just at a new level you weren’t at before. Regardless, I think you will know what I mean.

I have multiple friends with disabilities, and at least in the spinal cord injury world, I have learned this past year that changes ARE part of the norm. Knowing what I was able to do, and now knowing how I struggle to do them, and feeling held hostage by your body has been SO frustrating!! So what do you do about it?

One solution:

Curl up in bed. Cry. Get angry. Quit Trying. Be done with it all.

Although I have had the times of being in bed angry and crying, I have never been ready to just quit trying. I am always afraid of getting to that point and I refuse to let my mind go there. That solution just won’t work, and since ALL humans – disabled or not – have absolute value, this isn’t a good solution for any of us.

I have asked some of my friends to join me in a few helps I would love to give for when your world starts feeling smaller. Here is what we recommend:

1. Know Jesus.

When you know the Lord, and you truly believe that He has planned and ordered our days, then whatever happens in your life, you can cling to the fact that this IS God’s plan right now. This doesn’t mean you like it, and it doesn’t mean you understand it, but it does mean that you can know it is truth and that you can have faith that somehow these things are working for your good. It gives you a hope that your life story has a greater purpose and the lie in your head that is telling you that you have little value is just that – a lie. You can trust that your story is valuable in the Kingdom story that God is telling through your life.

2. Keep your mind busy.

I remember in the early days when I was still bed-bound and suffering from terrible panic attacks, I would truly think something was wrong and I was dying. The problem was that I really couldn’t nail down symptoms to even go to the ER. I just knew I was dying!! I wasn’t dying but that was what I thought. Those attacks were so debilitating and discouraging on top of everything else. I asked my hubby to buy me some old funny sitcoms so I could keep my mind engaged. I was really too ill then to read much of anything or to do any type of work on my computer. So, having something to just watch and entertain me helped me. I also believe in Scripture and there is a verse in Proverbs that said a merry heart helps like medicine. I took that literally and asked for comedy. Dick Van Dyke, I Love Lucy, The Real McCoy’s, and Just For Gags on YouTube became my daily routines. And it totally helped!! Laughing feels good, and not having to think about how bad you feel feels really good! So, that became part of my prescription for health! I still absolutely love to laugh and on my worst days, I try to find something that makes me chuckle. Having six kids in this home sure help with that!

3. Take care of yourself with no guilt….

I have really struggled with feeling selfish with this one! Because of my health struggles, I felt STRONGLY to turn down almost every speaking engagement last year. I only accepted two – one in Florida because our family likes to take vacation time there and I can work it around a meeting, and one that was only a couple hours away here in South Caroline. I knew that I had to take this year and figure some things out for me. I felt strongly that God wanted me to do that and so I had no guilt about that.

However, other decisions left me feeling some guilt:

• I started taking some meds (I have tried for 9 years to stay off all meds). I felt like I was being defeated and felt guilty, but it has truly been a blessing for me to get rest at night. My neuro system had to be made to calm down at night and not spasm all night long keeping me awake. It has been wonderful finally getting to rest!
• I started using a power chair…a lot…especially outside or for longer days outside. I felt guilty that I was being lazy, but I just do NOT have the strength to maneuver independently off of smooth level floors much anymore. So, I just wouldn’t go. The power chair has really opened up more independence for me to get out and around by myself and not be absolutely exhausted and in bed the entire next day. I just want to go around singing “I’ve got the power…” when I am out now! 🙂
• I applied for a waiver to get attendant care at home to help me. This one was HUGE! I was SO emotional about it and once again, felt like I was losing SO much independence. But…I realized that I could be more of a help to my family to GET help to have things get done around here, then to try to do it all and be no count, or things not get done because I felt so guilty asking my family for all the extra help. The waiver gives me 40 hours a week for help. I hire my own attendants and they help me from whatever I need help with personally to helping with cooking, cleaning, shopping, exercising, etc. It has been WONDERFUL! My friend, Kattie, helps me and so does my daughter Briley. They get paid to help me. Knowing that they are getting paid keeps me from feeling guilty for asking for help. It has been such a huge blessing to me.
• Good doctors and Physical Therapy. The only guilt I have here is that there have been a LOT of appointments and it makes me feel like a hypochondriac! However, I cannot stress enough how important it is to be proactive with your health. Especially when you really can’t feel most of your body, you have got to stay on top of things. I have been blessed with a new neurologist and neurological PT’s who have been working with me all this year to help eliminate any more decline and to try to help get my quality of life better. It has been a slow process, but it is working. I am not being promised any improvements, but they feel confident that if we are proactive and cautious, we have slowed this down.
• Rest. Ugh. I HATE holding still, but my body demands down time. This has been one of the hardest things on me honestly. I feel SO useless when I have to rest! But, I know budgeting what I have to work with is important. One doctor told me that I have to pretend I have $200 in my account for today and I have to be wise how to spend that day. So, if I have a busy evening, I MUST rest in the day. If I have a busy day, I MUST rest that evening. If I have a busy day ALL day, I MUST have the entire next day or two to chill. I watch people…and remember…how I used to go and go and go and I feel SO lazy!! But…I just can’t. No more than I can move my legs on my own anymore, I also cannot go. I have to rest. 

Do you see a recurring word here? GUILT!! But you have to let that guilt go. We have quality AND quantity of life. To have both, we must let guilt go for what we need to do. I assure you of this: PEOPLE DO NOT UNDERSTAND, AND WILL SAY THINGS. It will hurt your feelings and make you feel like a dog…only if you give them that power. I have given them that power, and it still didn’t change anything. So, I decided a better way was to just say in my head “until you have a spinal cord injury and deal with what I do (and I hope you never do) then you have no clue about my life and therefore what you say doesn’t matter a bit to me.” I can’t tell you how freeing that was!! Now, if people say something, I just smile inside my head and go on with my life. I really don’t care and I mean that!

4. But don’t lose sight of others….

Having to focus and take care of yourself so much…on a daily basis…truly can lead to selfishness. So, make sure to combat that, you find a way to be helpful to others. I firmly believe that we find purpose and value in serving others. It IS more blessed to give than to receive. Find a way to give back! In this day of online connections, there really is NO excuse not to find a way to give back. 

Are you stuck in bed or inside a lot? Can you find an online community for your specific disability and just decide to be an encourager in there? Can you volunteer to make phone calls for your church or a non-profit? Can you pray with and for others? Can you do online research work? Can you do graphic design for others? Are you able to get out and about? Can you volunteer? Can you serve in your church? Can you just be the community smiler? Do you know how many people just need a smile and a kind word? 

I have a couple of girlfriends who also are struggling with health difficulties. They have spinal cord injuries and they are strong Christian women. We have a private messenger thread where we stay in contact with one another, we pray for one another, we check on one another, and we encourage one another with truths from God’s Word. This is one way we can serve one another and gives us encouragement and purpose in our pain. And, we are each reaching out in our own ways to serve and give back to those around us in whatever capacity we can.

Find something to reach out and help others. I promise you that this helps.

In conclusion, they say when God closes a door He opens a window. I know that many times, we can feel that when that door closes, we are stuck in a tiny room without oxygen. But…we must remember to go open the window and stick our heads out in the fresh air. We may still be in the room, but there is still a big wide world out there.

Go open your window and take a big deep breath. It’s okay.