Disability Products That I Love!

As I am aging (just a little bit!) with a spinal cord injury, the “weaker, but still getting signal through” nerves in my arms and hands are tapping out. The experts tell me this is normal with my level of injury (C5-C7 incomplete), but it doesn’t feel normal to me. It feels scary! This wheelie-popping, manual wheelchair using, Cross-fit loving girl back then, is now too weak to push myself on anything other than a level. smooth floor, and my weakness and crazy spasms keep me from any productive arm work outs (still working on this though!). I use a power wheelchair, and self-care is truly its own full-time job. Having said all that…I LOVE hacking my way through this limited life by finding disability products that make my day just a little bit easier.

Here are some of my favorites!

Alexa!

I absolutely love Alexa and anything and everything that can connect to her. I can talk to her and with my voice alone I can control my TV, my overhead light, and get information such as the weather, and news updates. I tell her when to wake me up and she even reads a chapter out of the Bible to me in the morning while I am trying to get my body to loosen up enough to get up.

• I have a SMART wall switch which controls my overhead light.
• I have several of these SMART plugs that allow anything you plug into them to be turned on and off by Alexa.
• I have a SMART tv hanging on my wall. I also have the Alexa Firestick and I LOVE it! I can just tell her to search for “Play the next episode of the Good Doctor” and don’t even have to use the remote and push all those little buttons with these spasmy fingers!
• I can even tell my bed to raise up or down with my voice.
• Smart Thermostat – my kids got me a smart thermostat as a gift last year and it has been wonderful! A spinal cord injury breaks your temperature regulation and so your body can no longer control cold and hot. When cold, we can hardly get warm. When hot, we can hardly get cool. It takes a lot of external things to help us – heat or cold blowing, hot or cold showers, ice packs or heating pads, heated blankets or misters for sweat. When home alone, if I was too cold or too hot, I couldn’t reach my old thermostat. With my Smart Thermostat, I can control the temperature of my home from my phone. I LOVE it! Not sure if the kids love me having that much control now! 🙂

Truly, Alexa and Smart home technology has helped me stay independent and not constantly calling for someone to come help me once I get in bed.

Mobility/Transfer Aids

Transferring in and out of my chair is very difficult…and really, on the edge of dangerous, in the mornings when my spasticity is so bad, and at night when I am exhausted. I have found several things that have helped me:

• Bed rails for extra places to grab when I topple. (My bed has them built in, but I have used several different kinds over the years. I am traveling a lot now and need to get some that can travel with me so I can turn over in the night.
• Slick transfer sheets that really do slide you very easy.
• Transfer board that is lighter and easier to maneuver. It has spaces cut out for your entire hand to move it for those of us who can’t grip the board well. It also has built in grip tape which is very important for your board not to slide on you in the middle of a transfer.
• Adjustable bed – my bed raises its head and feet, but it also lifts the bed up and down. I never have to transfer uphill. I always lift higher than my bed or chair and let gravity help me slide down onto my next surface. This was gifted to me, but it would be well worth the money spent.

Pain Management

I think I should probably just stop with this category, but it is amazing what all you will try when you are desperate to find any relief. If it looks like it would help me with pain, and I can afford it, I try it.

• Air mattress overlay for my bed. (sweet friends paid for this for me!)
• Neck curve helper (my neck feels permanently crunchy and awful.) This does help stretch out those vertebraes and stretch the neck muscles that work so hard all day to just sit up!)
• Leg stretcher (this really is awesome, but it is difficult for me to do solo because my arms are pretty weak and can’t sustain a hold very long.
• Fuzzy slippers (I can hardly stand my bare feet to touch much of anything because of nerve pain. I have found that nice supportive socks (no seams), and a shoe help, but my feet feel the best in fuzzy slippers. I think the fur keeps my feet warmer and helps with pain, and the foam is cozy for the pressure of my feet pushing down all day long.) My kids might have had to pull an intervention last winter: “No MORE fuzzy shoes, Mom!”
• Pregnancy body pillow – this has been so much easier than stuffing pillows all around me at night to prevent pressure sores. It holds you in place so you don’t flop over – especially side sleepers!
• Shiatsu Back/Neck Massager – this feels SO good! It is amazing and you need to buy it yesterday. It lets you hang your arms in the loops (resting them) and that pulls it good and tight against your neck and shoulders for a much needed massage.
• CBD anything. I have gummies (with some THC in them for horrible nights with spasms), I have CBD drops for under my tongue that get in my system pretty quick and help loosen my body in the mornings, several different salves and pain creams, and rollers that stay in my backpack for spot pain in my neck, shoulders, arms, etc. CBD has been as effective for me as any of the neuro-suppressants I have tried – and that gave me really bad side effects. Lazarus Naturals is one of my favorite brands and they even have an assistance program that gives you a discount if you have a permanent disability.

Dexterity Solutions

This has probably been one of the greatest challenges to me trying to maintain independence….and the area where I have had to ask for help all the time. From the tiniest little things (like who is with me and despises those little coffee creamers where you have to peel the top off?!!!). OT was really helpful in showing me neat stuff they can make with a 3D printer and plastic they can mold around you for different helps. But…we all don’t have access to hot, molding plastic or 3D printers, so I am always on the lookout for anything that can help me function easier and take less time (it IS difficult to spray your hair with two hands trying to mash that little button!!) By the way…if you know of a hairspray solution, that would be awesome to tell me about in the comments!

Here are things I have found and use daily:

• Cat Tongue Grip tape – it adds grip to anything you put keeping your hands and fingers from sliding off.
• Rubber Pencil grips – you will need help putting them on, but they are great for makeup brushes, etc.
• Rubber bands – wrapping rubbers bands around objects also helps with grip. It keeps from sliding out of your hands and onto the floor, but it also lets you get some grip to unscrew objects. I can open my mascera with rubber bands on both sections, but without them, I cannot. It is too slick. Rubber bands shape to everything and can be added to almost anything!
• No Tie Shoe Laces – no shoe lace tying!
• These amazing pens – they already have a built in grip, but…they roll very smoothly. You hardly have to push. If I have to push down on a pen, it is already coming out of my fingers. I LOVE these pens!
• Gloves for Life – AMAZING!! You wear them, but they have crazy grip on the palms.
• Metal keychain rings – they loop on zippers and I have them everywhere. You can get a thumb or finger in and tug
• Plastic cup handles…or cups with lids that will give you a lip to keep from sliding out of your hand.
• Wall toothpaste dispenser – a lot easier than palming on the sink and making a mess!

I am sure there is more that I am not thinking of, but these are my top products I use every single day! Let me know what you have and use!

Healed of My Disability!

A spinal cord injury is simply broken communication.

The brain sends a message, it travels down the communication highway called a spinal cord packed with thousands of nerves that relay messages, reaches the part of the damage where the bridge is out, and can go no farther.

So, the higher the damage is in your spinal cord, the higher the communication gets broken. My damage is in my neck between C5-C7 vertebrae, so my communication damage has affected my arms and hands, my diaphragm, my autonomic system (blood pressure, temperature, etc), and everything chest down.

This break in communication makes daily life difficult and challenging. It brings chronic pain and atrophy which over time affect posture and seating abilities. It severely limits my functions and capabilities.

Once a spinal cord is damaged, it cannot heal itself. It cannot regenerate. It is broken beyond repair.

Through rigorous therapy, the hope is that the neural pathways will build new links around the broken parts and you can get some function to return, or you learn how to use other functioning signals to overcompensate and cover for the dead ones.

To this day, science is continually researching and experimenting trying to find ways to bridge the gap of brokenness in spinal cord injuries to bring healing.

Hang with me.

Christ is the head. We are the body. A relationship of oneness, working in harmony and fluidity, all functioning smoothly and healthy – running at full capacity to accomplish much!

When the communication is broken between God and man, a great devastating disability occurred. Man, in his rebellion against God’s beautiful design of fellowship and communication, chose his own way instead of God’s and it cost him greatly. His rebellion of sin tore apart the communication. He now experienced pain and loss and grief and sorrow and dysfunction….all things God tried to spare him.

But God loved so much, that as a true judge, evil has consequences. Blatant crime cannot go free or there is no point of any right or wrong. Wrong must be reckoned with. So who? Who must pay the penalty of that rebellion?

God did.

God left Heaven and became a man and dwelt
among us. Feeling our infirmities, our reproaches, and all of our temptations. He entered the world just like we do….as a helpless, dependent baby, and journeyed life revealing Himself to this world – not only as the Son of God, but as God the Son – who came to bridge the gap between humanity and Himself.

Do you want to know God? Know the Son – who was here, walked among us, was one of us – laying aside His deity, and humbling Himself to be a human, a servant, a teacher and a friend. How do I know there is a God? Was there a Jesus? Jesus IS the witness of the reality of God!

The Great Physician, came and through His sacrifice on the cross – where He willingly laid down his life as the Sacrificial Lamb…bridged the gap and healed our transgressions, our infirmity of sin.

It is finished. The rebellious sin of this world was forgiven. Christ suffered hell so we wouldn’t have to. He conquered hell, and 3 days later, He conquered death, and as God….even rolled away His own stoney grave that could no longer hold Him captive.

So now what?

This gift. The gift of forgiveness. The gift of a conquering Savior. The gift of eternal life where He too, will resurrect us from an earthly death to an eternal life with Him. The gift of His daily presence as the Holy Spirit dwelling with us, teaching us, guiding us, and bringing His gifts of love, joy, peace, long suffering, kindness, gentleness, patience to our daily lives as we follow and obey His leading.

He extends this gift to us…freely. For whosoever will. It is not His will that any should perish. He wants all to come to Him!

But….you will never need a healer if you don’t even think you are disabled.

I would look like a fool, as disabled as I am, if I was in denial and would not admit it. I may not want to wrap my pride around it, but it wouldn’t change the fact and reality of it.

We must know we are most desperate and needy of healing. That is called admitting.

We must believe that a healer is there. If I knew there was a doctor who 100% could heal me in Argentina, I would first have to believe that report before I ever saved money, or booked a flight, made an appointment and went through the procedure.

For me to sincerely commit to such a procedure, I would truly have to believe. I would view evidence (nature declares the existence of God, my own nature declares my need for God, and others should be declaring the truth of God), but at some point…even with all that evidence…I would have to believe it for myself. This is what it means to believe in YOUR heart.

And then I would take action. This is confession. Not a “I am sorry for…” list because who can even remember everything we should be sorry for? No, this is a statement. A proclamation for my belief.

I am disabled. I am broken. I cannot make myself move or walk or heal no matter how much I have tried. I am unable. I cannot.

I need a healer. I need a Savior. I need Jesus.

I am accepting His forgiveness He is asking me to receive. I am choosing to give my life over to Him…to trust Him, obey Him. follow Him.

I am laying on the surgery table, knowing I am helpless, knowing I need healing, believing you are the healer. Naked. Vulnerable. Trusting.

❤️ I am a believer.

❤️ I am healed.

Old things are passed away. All things are new. I have been made a new creature in Christ. What I could not do, I now can do through Christ…and the healing He brought to me.

And I live the rest of my earthly life:

❤️ Thankful for my healing and thankful to the Healer. I love Him. He is now my best friend.

❤️ Telling broken people there is Healer. I cannot make them admit they are disabled. I cannot make them believe. But I can keep telling them it is true.

❤️ Testifying with my life and my choices and my actions that the Lord is a Great Physician. That He is enough for all of our earthly sorrows. That the spiritual healing far exceeds the physical. That He can take care of me.…and you. That following Him is a life of unknowns…but He is not shaken when I am, and He will carry me when I feel I cannot go on.

This is the Gospel.
This is the Christmas story.
This is the message of good news for all people.

My friends, if you want to talk more about this, please message or call me! I would love to tell you all about it.

My fellow believers…please…pray for me! God is moving things along very quickly for what He has called me to do and I will need your prayers and your partnership! More information coming at the New Year, but keep up your prayers for me as God keeps leading me!

Raise and Praise

“Then I will raise just one for as long as I am able!”

This is my anthem and I will tell you why.

Music speaks straight into my soul. It moves me.
It touches me. It affects me.

Which is why I learned as a teenager, that I needed to be intentional about what music I allowed into my life.

For years, I always felt ”stifled” in worship settings, because of a word, or a look, or an attitude of expectations of what was appropriate or not, or the embarrassment I “caused” to be emotional in any way. So I learned to stuff it all in. Be tough. Hold it together. Don’t make anyone uncomfortable.

But…the Lord works. He works anyway. I am not talking about swinging from lights…

I am talking about practicing with Janie Ross and Jeanene Divens in a little
music room at college preparing to sing in chapel, and we would be so moved by the song in our hearts before we ever went on a stage. Oh I would be excited about those songs! We were would have our own little shouting and testifying services in that little room…all by ourselves. What sweet times!!

I am talking about laying in a bed, unable to move or do much on my own, in excruciating pain, and the torments of the dark night raging in my soul….and never letting the piano CD of Jeri Lynn Wilkerson and Jonathan Dickey stop…all night long. If I did doze off to sleep, I was awakened in sheer panic and anxiety and those sweet songs of faith would be there waiting on me. As the melody of the hymns calmed me, I would recite the words of their great truths to remind myself of a God in the night season. And the Lord would give me songs in the night.

I am talking about standing in an invitation in a small, country church and the strains of the reality of home life bearing heavy on my life and singing deeply “All to Jesus, I surrender. All to Him I freely give. I will ever love and trust Him, in His presence daily live.” And choking back the hot tears, hiding my pain, as I sung those words with no abandon…”All….All…All…”

I am talking about being alone in my car and just needing to take a drive to calm the restlessness and fears of the reality of my future, and listening to the Brooklyn Tabernacle Choir lift my heart in worship, while tears streamed down my
face. The tears flowed more freely now. I did not care. I was allowing myself to be me…to let the tears flow. To let the emotions be exposed.

I am talking about almost every single Sunday at my church as the Lord merges the songs I hear, with His story in my life, and I can no longer, nor do I care, to hold it in.

My arms are too weak to hold them up long, and my left arm not at all, but…as long as I am able, and even if it is just one arm…this girl is raising her hand in thankfulness, in submission, and in honor of my precious Savior and the journey He has carried me through…with the songs, hymns and spiritual songs He uses to speak to my soul.

And as long as He moves in my heart, then I will raise my hand…even if it is just one…for as long as I am able!

The Journey of Grief

I was awakened this morning praying for friends who are walking through valleys of grief right now.

Grief is one of those subjects that is hard to describe and talk about because it is so deeply felt and experienced. Some feelings and experiences are too difficult to fully put into words.

Dealing with different levels of grief in my life from family who have forsaken, my paralysis and the trail of physical devastation it has and continues to cause me, and my own marriage falling apart and watching it implode one horrific decision at a time…and I know the journey of grief.

So a few thoughts from my heart:

Grief is necessary.

We have multiple Bible passages speaking of lamenting, sorrowing, mourning and grieving. It is an emotion that God Himself experiences, and one that allows us to process our losses in layers and waves…instead of it all being poured out upon us at once. We could not handle it.

Friends are needed.

Not the Job’s friends people…those who try to figure out the “why’s” and “what if’s” and the “you should have’s”…

Did you know in Jewish culture you were to go and mourn with others, but you were not to speak until they did? And you were to let them lead the conversation. If they wanted to talk of their grief, you did. If they wanted to talk about the weather, you did. You were to stay silent until they spoke no matter how long. And you let them lead the conversation. Job’s friends did well at first…and then they started in.

Friends who will sit with you, and let you sit in silence, or speak of your grief or anger or pain or confusion…and just BE with you in those moments are priceless.

Let your friends love you. I have done this wrong…and I have done this right. I assure you of this….this is your season of grief. Give yourself that space and lean into your friends who you know to be safe for you.

Loneliness is soul-deep and at times, crushing…smothering.

You have entered a new identity, that most around you cannot understand the depths of impact on your daily life. You are now in the epicenter of the storm. Others feel the intense ripples on impact, but over time, those ripples fade away for those around you. And that is normal!! You need surrounded in the onset of your trauma, but over time, as that eases up, you realize that it is still very much daily for you.

This is part of the journey where you MUST realize this for yourself, but…it is necessary to remember it for others also. You cannot realistically expect others to feel as you do, or you will become bitter. You cannot expect to “get over it”…instead, you learn strategies to “get through” it. Those triggers, or layers, or circumstances – that throw you into a wave of grief…you DO learn over time, how to navigate. And you learn to do that a little quicker with the journey of time.

Jesus is.

I cannot put anything specific after “is” because it would be too limiting. The above point of loneliness in grief – whether that is emotional, physical, cultural, or spiritual – is truly where He is. There is a fellowship of suffering with Christ and it is difficult to communicate. He knows. He is.

One of my favorite names of God is “I AM”. He has been my Comforter, my Counselor, my Father, my Confidence, my Strength in extreme weakness, my Guide, my Light, my Companion, the Faithful and True, my Redeemer, my Healer…and on and on. He has held me, sung over me, encouraged me, and overwhelmed me with His steadfast love. He doesn’t care about titles or abilities or job descriptions. He loves and cares for His faithful and His ways and purposes are higher than mine. He has my heart and I trust Him.

He has been and always will be…all that I need. In my deepest times of loneliness, when my heart grieves so longingly, at times, for what I think I would have chosen for my life, I remember that He too grieves with me, and collects my tears – that is how precious they are to Him – for the losses we experience in this broken world.

And He simply is…whatever He knows I need.

Sweet friends, I am praying for you and your grief and that you may feel the arms of Jesus around you!

Paralyzed 13 Years Today…

13 is supposed to be an unlucky number…but today, on this 13th anniversary of becoming paralyzed…I feel so very blessed.

13 years ago today, I had been out of it for over 24 hours. When I was finally awaken…I wasn’t in horrific pain like I had been some 30 hours before. No pain….also no feeling. No movement. I was paralyzed.

Just like that my life was dramatically changed and it has been ever since. That morning…I wasn’t sure if I would live or die. That morning kicked off a season of being as helpless as a tiny baby. A time when there was no way I could have fathomed living like that for another year…let alone 13.

But this morning…I woke up in a lot of pain because of weather…but thankful for another morning of life. I independently got ready for my day. I drove myself to a meeting. Life was very normal this morning. So much personal change in my life, yet the Lord has continued to help me all these years.

I am not sad today. It has actually been a wonderful day. I came to South Carolina this weekend to speak at a ladies retreat. My youngest 3 kiddos joined me on this trip – excited to see their friends and my oldest daughter who lives here. We spent last evening with friends.

I spent the first half of today at the ladies retreat and it was so wonderful! My heart for ministry is passionate as ever and any opportunity to speak about my precious best friend, Jesus, just lights a fire in my soul!!

This afternoon and evening we spent with my beautiful girl, Briley. We sang around the piano, talked a lot, went to the mall and ate Chinese and all of us just had such a sweet time together.

So tonight, as I start year 13 of being paralyzed, I don’t feel unlucky. I feel peaceful. I feel sure. I feel joy. I feel unbelievably taken care of by my Lord. I feel excited. I feel so thankful for my children and the encouragement they are to me.

God is prodding my heart for specific ministry and I am waiting on Him to show me how it should all happen, but that excites me! And I pray that year 13 will be the year it happens!

I am so thankful the Lord spared my life 13 years ago. I am thankful He has given me these years to serve Him. It is my prayer when I come to this blog and write about year 30…I will still be excited and talking about the goodness of the Lord!

Thank you dear friends for your love and support!! God uses you to bless me!!

Here’s to year 13!!!

SCI Awareness – Upper Motor Neuron vs. Lower Motor Neuron Injuries

Once you have a SCI, it is easy to know that your lungs, or arms and legs are weaker. But there is much more going on in your body that you must learn. The brain stops at the top of your neck and your spinal
cord is the pathway for every single message that is sent out.

Like we discussed yesterday, if you are a complete injury, none of those signals are going to get past the level of your injury. If you are an incomplete, something will get through.

Stick with me…this does make sense by the end!!

Our spinal cord has upper motor neurons and lower motor neurons. One of those will have gotten damaged. Higher injuries affect the upper motor neurons. And the L-level lower injuries affect the lower motor neurons.

What happens, is that a signal tries to go from my brain to my body. It hits the damaged part in my spinal cord and the messages are scrambled. My lower motor neurons are not damaged. So, I don’t have a lot of voluntary movement (in my arms I do, but nothing chest down), but my reflexes work because they are lower motor neuron driven.

When my brain sends a signal (hey, your shoe is too tight…even though I can’t feel that)…my upper motor neurons cannot carry that message, but my lower motor neurons do. So my body will start spasming somewhere and I know to check and see why.

My spasms and spasticity are the result of me having an upper motor neuron injury. Those with lower motor neuron injuries do not deal with spasticity because their upper motor neurons are in tact.

Spasms are not controlled by me but is my body’s way of communicating to me that some sort of message is trying to come to my brain. It may be important and I need to get checked medically (like my hip being out of socket for a week and I never knew it except I had horrific spasms that wouldn’t stop so I went and got checked), or it may not be much and I just need to adjust something like move my legs, reposition in my chair or go to the bathroom. Here are a few favorites my brain likes to send my body messages about….

“Hey, you just rolled over a bump in the sidewalk.”

“Hey, your bladder is full.”

“Hey, you are sitting crooked and you are not comfortable.”

“Hey, your foot is too crooked on the footplate.”

“Hey, that water is too hot or cold.”

“Hey, the wind is blowing on your legs.”

“Hey, you just stretched out.”

“Excuse me…but…you moved without letting me know!”

“Hey, the doctor just hit your knee with a hammer.”

And on and on and on….

So….if you seen my hands or core or legs shaking and spasming or stiff as a board….it’s okay.

It is just my brain trying to send me a message…and you know I’m a talker! 🙂

SCI Awareness – Your Classification

When your spinal cord is injured, you get classified:

• Is it a traumatic (car wreck, fall, gunshot, etc) or non-traumatic (tumors, illness, blood clots, etc). They have to know this to proceed with treatment to stabilize and minimize damage.
• What level are you damaged at? This is where they do a lot of testing (MRI’s to see, but also all the pin pricks and vibration and deep pressure and light touch and also strength testing to see where you have some muscle activity or not.)
  Our spines are cervical (neck), thoracic (most of your back) and lumbar (lower back). C level,
  T level or L level. And there are a number of vertebrae’s in each level. C has 8, T has 12 and L has 3. Then, they give you an Asia scale letter that really helps determine how complete or incomplete your injury is. Complete injuries have zero nerve signal going to any part below your injury, and I completed have some nerve signals still traveling through.

So you might be paralyzed from your neck down and using a sip and puff mouth piece to drive your chair, but if you can get one toe to barely wiggle…you are an incomplete injury because that nerve signal can travel.

I am a C5-C7 Asia C incomplete quadriplegic. I am an Asia C because C5 is a high level injury and if I was complete I would not have much use of my arms. I am much more “complete” from chest down, but because I have such good arm function for my level of damage, I have a lower Asia score.

Why does this classification matter? Well, in the course of my daily life it doesn’t really. But from a medical standpoint, it is a foundational marker for them to know if changes happen (for good or bad) and what to be alert and working on for your personal care.

This is why my increased weakness in my upper body over the last few years has been confusing. It DOES match my original injury levels…although I have gotten weaker…and age and overuse can absolutely make that happen. But…they are just making sure there isn’t something new happening in my spinal cord to cause new problems.

Okay! Now you know! When you hear two wheelies talking shop and saying “oh yeah, I am a C5/C7 incomplete…what are you?”….now you know some of our dialect! 🙂

September is Spinal Cord Injury Awareness Month

Why is awareness necessary?

• It is NOT because I need you to understand my life and all it’s stuff…although that may happen.
• It is NOT because anyone is seeking pity or “wow, your life is so hard I would just want to die!!” No, eventually, you would not want to die. 🙂
• It IS because there is much in society that has come so far, but laws and leaders and people constantly change and with those changes, the disability community is truly always one of the bargaining chips on the table.

It will always involve money and if society wants to spend any money to allow us to be a part of life.

Whether that is insurance approvals for medically necessary items to keep us alive and healthy, or accessibility issues that allow us to integrate in society and live our lives also, or even just breaking the societal positions and abilities that are expected of us…that are SO wrong!

When humanity works together for the best of other humans, it is powerful.

Awareness is a reminder to the disability population that we must continue to pass on to other generations what has been handed to us and continue to educate others. Understanding is KEY for action to happen.

Awareness is a reminder to the non-disabled population to remember your human family and help stand up for the same quality of life you enjoy and to learn a different perspective of a life different than yours!

Let’s Talk About Independence…and Assistance

Recently, a conversation was had in a disability Facebook group, about the trade off between receiving personal care assistance vs. losing personal independence. Specifically, “if you choose to get personal care to help you, when you can actually do it yourself (even if it takes you an inordinate amount of time and energy) – is it worth losing your own independence of doing it yourself? It was a respectful conversation with various thoughts from the commenters. One thing that resonated with me in that conversation was how perspective and understanding are needed even within the disability community.

They say a spinal cord injury is like a snowflake, because no two are alike. And that is so true! Maybe you could even say like fingerprints – custom and unique to each individual. We all know this academically, but I believe that thread revealed how limited we are within our own perceptions of what we personally experience.

In light of that conversation, my heart to keep learning and educate, and, of course, my own evolving life experiences…we will talk about this!

I have written before (here) about attendant care, but the purpose of this post is to have a learning conversation about attendant care vs. losing independence.

To start, let’s just answer some foundational questions:

Who Are Attendants?

For definition clarity, an attendant in this post is anyone who helps you attend to any needs throughout your day.

What Are Areas I May Need Someone To Help Attend Me?

• Showering/Bathing/Personal Hygiene
• Bathrooming (either bladder or bowel care).
• Getting Dressed
• Stretching/Exercising
• Body positioning in chair or bed
• Transfers
• Food Prep/Cooking
• Feeding
• Shopping
• Driving
• Cleaning/ Housekeeping
• Reaching items/random needs out of reach or ability all day long

I am sure others could add to this list, but I just want you to get a proper big picture view of each of these categories and how each of them is affected by a spinal cord injury. How much you are affected brings us back to that snowflake/fingerprint analogy, but each of us are affected in most of these areas.

Why Am I Even Thinking About Attendant Care?

I cannot speak for everyone, but I guess it is helpful to assume that attendant care conversations start due to insufficient independence. For example, I didn’t learn about spinal cord injuries until AFTER I had one…not before. I didn’t need a wheelchair until I couldn’t move. I didn’t need bladder and bowel routines until I didn’t have control of that anymore. I didn’t need hand controls to drive my car until I couldn’t use my legs. Follow my thinking? If I can handle everything perfectly, I don’t think we would even be having this conversation.

For the sake of education, I would like to challenge those of us within the spinal cord injury community to remember the vast differences between us and remember that what we all have in common is a spinal cord injury, and that is where it branches out from there.

In light of assistance and spinal cord injuries, I want to make a few observations:

A quad is not a quad, and a para is not a para.

It is not enough to try to compare quads and paras. I know paras who need daily care (for reasons mentioned in a moment), and quads who don’t. I know quads who are very limited and have their care down to only needing one thing, and quads who can walk but have zero arm function and must have daily care – even to be fed. There are SO many differences among us. Simply because my neighbor is a female like I am, doesn’t mean we have the same hobbies, personality, tastes and preferences. We are TOTALLY different, even though we are both females. I believe you follow me.

Other issues may be involved.

“I am a quad or para, and I am independent, therefore, I know you are capable of that, and you can and should too.”
That is an attitude that can be felt, even if the words aren’t spoken. It can be felt when someone can drive and someone else can’t. It can be felt when someone can transfer like crazy and someone else can’t. It can be felt when someone chooses a power chair over a manual chair. It can be felt when someone can handle all personal care and someone else cannot. It is my hope that we can address this topic with an open-minded perspective that someone else’s needs don’t have to match ours.

There are other issues that play a HUGE role in needing extra assistance:

• Age
• Weight
• Other injuries (a bad shoulder can stop you in your tracks!)
• Pain levels
• Various strengths/weaknesses among us – especially in incomplete injuries where some nerves get juice and others don’t
• Spascticity/ Spasms stronger than you are
• Other health problems (diabetes, heart, arthritis, etc.)
• Not having a family/support system regularly that can help when needed
• Extreme fatigue/energy levels that deplete quickly

Unless you know every detail of someone’s life, there is no way to know the circumstances of those who need daily assistance.

Final Thoughts:

Before I took the time to write this, I did a little research among my friends. I asked 4-5 of them, who have various levels of injury (both paras and quads), and assistance needs, the details of their level of injury and what assistance they needed daily. Every one of them needs something from someone else throughout the day. Maybe it is only the bowel program, maybe they don’t drive yet and need to be driven somewhere, maybe it is a full daily 24 hour routine, or maybe it is simply getting something from upper cabinets or shopping assistance, but they all needed something in their day.

Independence is all in how you personally define it. Maybe it is important to someone to do every thing they can for themselves, no matter how tough, challenging or depleting it is. For someone else, it may not be worth the trade-off to do everything, but then be held captive to a spasming, pain-wracked body so totally depleted of energy that you cannot function the rest of the day. And for others, they may have every desire to do something alone, but they are physically incapable of doing anything in any way. Needing energy to invest in things that also help your mental and emotional health is also a huge component for many who would rather get the physical out-of-the-way, so they can invest their lives in what they enjoy.

I can’t speak for anyone else, but for me, assistance is so much more freeing. My pain and spasms make almost every thing I do extremely difficult, and that does not “increase” my independence. It makes me a prisoner in my own body. To have someone alongside me to help with the “daily” is extremely liberating, because it allows me to enjoy more things that give me purpose.

Defining personal independence is just that. It is personal. To run your own life, the healthiest way for you, and frankly, not allow others opinions to sway what is best for you, is the greatest independence you will have.

Let’s live our best and give others the space to do the same!

Here is another blog post by Jenny Smith Rolls On that speaks to this topic.

The Pain Study

I recently posted on Facebook that I had been chosen for a research study from the University of Washington to deal with chronic central nerve pain for those who are employed. Central nerve pain (or neuropathic pain) is caused by damage to the central nervous system, which is why you must have a brain injury, MS, be an amputee or have a spinal cord injury. My post created a curiosity for what this study will be about, and so I thought I would share a little more here!

The criteria are specific and the reasons for that are:

1. Those are the most common categories that deal with chronic/phantom nerve pain.
2. Being employed makes typical pain management harder to do.

Let’s unpack these two reasons:

Chronic pain is technically defined as pain that has lasted longer than 3 months and simply doesn’t go away. It may be better or worse some days, and it can be managed with different treatments, but it is always there. Those with brain injuries, MS, have had amputations or a spinal cord injury are all categories whose neurological systems have been compromised. Our neurological system is an intricate and vast computer system that operates our entire body. As you can imagine, when it has damage, it affects so many aspects. Nerve pain is not observed, but it is certainly experienced. It can be specific at times, and other times it can ride the electrical circuit of your system and wreak havoc. These specific categories for this study all have high incidences of chronic and severe nerve pain.

Since the categories were chosen specifically, then why the employment part? This is what the study is going to focus on. Professionals help individuals manage their nerve pain through medication, mind control, activity, rest and other avenues that can be utilized at times when pain levels increase. For example, if I have had a fun day away from home, I always know that the next day will be higher pain. The multiple transfers in and out of my vehicle, the jostling of uneven terrain that makes my body get tossed about, the long hours of sitting in my wheelchair and the act of balancing my head and shoulders that is so fatiguing are areas that raise my pain levels significantly. Since I know my pain levels will be higher, I have to take a “low key” day the following day.

“Low key” means a rough morning getting ready because my body will be pretty spastic and difficult to move. I will require more sleep because of the fatigue, a longer morning in bed because my body really won’t be as anxious to get in my wheelchair, probably a hot shower or electric blanket to calm my spasticity down, a day at home where I can lay down multiple times as needed or get into my bathroom often (high pain makes my stomach hurt) and an early bed time to get back out of my chair. These are just the physical manifestations of high pain days. They emotional side is that I am grumpier on these days. It isn’t that I am hateful, it is just that when I feel really bad my fuse is MUCH shorter and so I just seem to trigger quickly. I apologize to my kids a lot on these days. Cognitively, I struggle to focus and always feel I accomplish so little of what I wanted to get done as I mentally moved through molasses all day long!

As you can imagine, being employed with chronic pain can have severe consequences for work experience. Chronic pain is a huge factor in why many people are truly not able to work and be substantially employed. Their minds are willing, but their bodies fight them daily. It makes for a very difficult and discouraging work experience. When you are trying to work a job to pay your bills, it is not so easy to just go take a hot shower, or stay in bed all day, or even find other activities to keep your mind engaged and rerouted so as to not think about your pain.

This specific study will be working with professionals who are choosing the suitable candidates to test online treatments and pain management that we will go through and be taught how to self- regulate and manage our pain through these new methods….even AT THE WORKPLACE!

I got chosen, I match the criteria they needed, and next week I will have my initial online therapeutic session. It will last for 8 weeks, and I am praying it helps relieve some pain for me!

Thank you all for sharing my excitement about this and for praying for me!

Alicia