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.

I remember in the early days, I would sob thinking there was NO way I could live like this for another year…let alone the rest of my life. My doctor had me go to the license bureau for a handicap tag for my car and the lady stamped a 5 year renewal stamp on it and I started crying. “5 years?!! Why did you say to renew in 5 years? I will NOT still be paralyzed and even need that stupid thing in 5 years.” I didn’t speak those words out loud, but they were being screamed in my head as tears rolled down my cheeks.

Yet, here we are. Today marks year #12. Some days, it feels like I have been rolling my entire life, and other days, it seems like such a short time ago that my daily life was much less complicated!

I have spent this week at my Grandma’s. I always struggle some emotionally this week as my mind seems to “remember” not just the day I was paralyzed and my life turned upside down, but also the time before I was paralyzed. It is a mental battle just processing all of those memories and balancing allowing myself to take this time of the year to grieve my loss, while at the same time, not allowing myself to wallow in a pit of sadness and self-pity. So, the younger kids and I took spring break and came to my sweet Grandma’s house. Sometimes a girl just needs her Grandma!

My word for 2021 is “Discovery “ and as I have had time to think about some random things today, I thought about things I have discovered the last 12 years as a woman with a disability.

1. I would love to go back and whisper over and over into the ear of my younger self – that I would be alright. I was pretty sure my life was over, but it wasn’t! God wasn’t finished with me. It took a couple years for me to reach this place of discovery.

2. I have discovered who truly cares. It is those who actually show up in your life when your days are the darkest and know to just be. It isn’t what they do, but it is that they are just there for you. Discovering this is both a sad and joyous process. It is sad for those you thought cared for you, and it is happy when you see how much others care for you.

3. I have discovered a network of amazing people with disabilities whose support, tips, encouragement and challenges have led me to a unique tribe of “my people”. They get it. They live it. They know it. They understand nerve pain and spasms, wheelchair lingo, bladder and bowel programs, wheelchair parts and repairs, and the frustration of a lack of accessibility. Since when do you and a stranger ask each other questions for tips on bowel programs?!! Really?!!! Yep. In our “tribe” these conversations are quite normal…and helpful!

4. I have discovered how little understanding there is about spinal cord injuries in the general public and general medical practices and educating the masses has been a calling for me I really enjoy. I hear positive feedback from my disability “tribe”, but also from brand new injuries, OT’s, and PT’s which is what really excites me!

5. I have discovered how perfectly normal my disability is to my children and how easily they interact with others with disabilities. I am SO thankful that has been a result of my paralysis. My kids see the person – not their abilities. The world needs more of that!

6. I have discovered that I no longer need to prove my “value” to give people the perception that I wasn’t as disabled as I really was. I was uncomfortable with that word and I was sure everyone else was too so I worked very hard to be as “undisabled” as I could possibly be. I learned, however, to embrace my disability as just a part of me. It is not something I have. It is who I now am and I am very comfortable in my disabled skin.

7. I have discovered that aging with a spinal cord injury is not very easy. Each day seems like a few more little nerves die off or get weaker and my incomplete injury just gets a little less incomplete. Secondary complications plague you a little more the older you get. I am only 43 so I am NOT old, but truly, each year seems a little more riddled with doctor visits, health adjustments and some new normals.

8. I have discovered that doctors CAN be trusted again. I had my doubts after I felt like I fell through so many medical cracks, but I have been blessed with an amazing health team who care about keeping me at peak performance and I am so thankful for that.

9. I have discovered that it really is okay to ask for help, it is okay to get devices and aids that can make daily life a little simpler, and it’s okay to get attendant care as needed. It doesn’t make you weak, and you do not have to try to “will power” your way through everything. It’s okay to make activities of life simpler so that you have more energy and time to enjoy that life!! Being in charge makes me the decision maker, but utilizing resources to make my life a little easier is wisdom.

10. I have discovered that fearing certain parts of my future is ongoing and must be turned over to Jesus on a weekly… some times daily… basis. I want to be a good steward and plan for things in my future to live independently as long as possible, but I don’t want to live in fear of the “what-if’s”. For me, peace is making wise choices to prepare but then to turn it all over to the Lord. He loves me. He will not leave nor forsake me and so I just read in Him.

11. I have discovered that things I thought I could never do, I can do. It may look different. It may function different. It may take me forever to do it. It may take my tribe helping me, but I figure out a way to accomplish it. A manual chair is now too difficult for me to push because of neurological weakness,unless it is just super flat, so I went to a power chair! As I have lost arm strength, I have discovered new ways to hold things, open things, lift things. I have found adaptive resources that help and again, figure it out. It is almost a game I play of “okay, how in the world can I do this now” and a lot of thinking outside of box and researching and asking other people with the same disability how they do things – from personal care nobody sees all the way to public outings with new problem/solutions that need solved. I am so thankful to live in a country with so many resources.

12. The greatest discovery in the past 12 years, is my walk with the Lord. I lost much of my bodily functions and am pretty weak physically, but… it changed my life spiritually for the better and I have never felt stronger. And for that, I would NEVER get rid of my paralysis!

Today, as I “remember”…yes, there will be a few tears. Life is not easy and I can grow very weary with chronic pain and just a daily struggle to function at times. For me, those tears are just missing those easier days “before”.

But… there will be lots of laughter, memories made, friendships enjoyed, and I will get through this day like every other day – in the strength of the Lord and His grace to face another year. And it will be a good day!

Thank you all for loving me and following my journey. Your support and encouragement mean so much to me! God uses you to help me and I am thankful!

This crew…they truly are the main reason I get out of bed each day.

They inspire me, correct me, challenge me, encourage me and love me. They are fiercely protective of me and yet I can get on their last nerve. They laugh with me, and they laugh at me. They think I am cool in one moment and an old lady in the next. They have made me laugh, they have made me mad, and they have made me cry…for both happy and sad reasons…and I have them. They aren’t perfect and neither is their Mama, but I would do anything in the world to make sure they are healthy in every way…physically, emotionally, and spiritually.

They are my tribe. I would give my very last breath for these people. I LOVE watching God write their life stories (sometimes holding my breath and covering my eyes!) and I love watching them grow and learn and fail and succeed.

These are my children. My treasures. My only earthly possession that I get to take with me into eternity. I pray that my life will never discourage them from following Jesus!

My Briley – Strong. Independent. Knows her mind. Fair minded. Hard worker! Had to grow up way too fast and because of that, is extremely responsible and reliable. She has had her own mountains and valleys and she has come out stronger and more sure of herself because of it. She has lost almost 100 lbs and is the best EMT! She works hard and takes overtime and encourages others that work with herS Her mind amazes me with her ability to retain medical information. I love watching God use her to help others! My favorite times of the week are when we get to FaceTime and catch up. She is 100% a grown woman and our relationship has changed. We now just get to be dear friends and I get to support and encourage her and she does me.

My Caleb – Tender. Compassionate. Empathetic. Responsible. He is a man of l character and integrity. Hard worker. He has led from a back seat with his own character and relationship with Jesus and is strongly led by God’s Word. He works full time, does full
time college classes online and still makes time his Mama and younger siblings who need him. He already has a strong reality of servant leadership in his life and I cherish his perspective and counsel.

My Isaiah – Strong leadership. A logical thinker. Loves consistency and hates hypocrisy. Thinks much of spiritual things and lives them out without much talking about it. He just is. He is constant. A strong force in this family. I admire his work ethic and his willingness to own up to the areas in his life he works to improve. He is very diligent and trustworthy. He is also a man of character and integrity and his word is his deed. I love asking him for advice about things because he sees in such big picture.

My Audrey – Tenderhearted. Merciful. Behind the scenes. A servant’s heart. The quietest of them all, but don’t let that fool you. She has a good head on her shoulders and thinks both practically and is so empathetic and can see other perspectives as well. She is a hard worker but her work is more intentional and takes on meaning for her vs just muscling through it. Her ability to see an entire situation and make a call is already wise beyond her years. She is a nurturer and loves to take care and comfort – whether that is a sibling, an animal, children and even her Mama. She loves Jesus and is tender to His Word. I respect and need her perspective as she thinks differently than me.

My Macey – Quick-witted. Spunky. Very fair. She has tremendous discernment and can see through a person or scenario and be exactly right. She is confident and sure of herself, and she is very willing to laugh at herself when she gets too energetic in being confident for someone else’s life! She is disciplined and a diligent worker. She has a great sense of humor and a great love and talent for music. She loves Jesus and wants to serve Him. I love hearing her thoughts and opinions about things because her perspective is almost always on point.

My Elisha – A helper. Very observant. Caring. Good Common sense. I rarely have to ask Elisha for anything I need help with. He has normally already observed, assessed and has a solution in place and then tells me. He is almost always spot on! As the youngest, he has a lot of “parents”, but that has matured him and he is learning how to filter voices in his life and what is of value and what is not. It is a wonderful life skill that is maturing him. He has a strong sense of right and wrong and such a tender heart to the Lord. When God speaks to him about something, he has decided to be quick to come talk with me about it and not hold it in. I am so proud of him for that. He hangs out with me a lot while older sibs are doing their older sib stuff together, so he and I have a lot of fun watching movies together and talking.

I talk a lot about my kids, but I have given my life to raise them, to educate them and to love them. They are huge in my life. I am so thankful for them and the investment they have made in making me a much better Mama to them. I am still learning and working on it, and we are all learning and growing together.

They truly are my favorite “co-laborers” in the faith.

“Hey Mama…will you take us bike riding tomorrow in Chattanooga? It is supposed to be beautiful and then rain is moving in for a few days and we need out of this house!” This is what my kiddos asked me Wednesday morning. And this is what I would love to do with them!

Bike riding along the river in downtown Chattanooga has become one of our favorite activities. I can cruise along in my power chair and the kids can ride! My chair will last 10 miles before it runs out of battery which gives us a full day. You can rent the bikes very affordably and we love to pack a picnic. It makes a wonderful day!

And then…I wake up feeling pretty cruddy. Pain and spasticity have taken over in the night and I am struggling just to get blankets off of me and to sit up. What to do?

This scenario happens more than I wish: Plans are made. Excitement is generated. Mom wakes up feeling awful. I have no control over my body and how it will feel, but the guilt over disappointing my family, and being the reason plans get cancelled is heavy.

Here is what I have learned over the years….

Try anyway. Start with one step and then take another. See how far you can get. That’s it.

When you are in a lot of pain, what you WANT to do, is to go curl up in a ball and stay in bed. The last thing you FEEL like doing is to go transfer over and over and be away from the comfort of your home. But what you NEED to do, is try.

I will always start with saying to my kids, “Let me go take a shower and see how I feel after that okay?” The hot water can calm my pain levels down and loosen my spasticity so that is my starting place.

After my shower, I get dressed. That takes energy…especially when you are fighting your body so. I need some energy for the rest of my day if I am even going to drive safely. Neurological fatigue is nothing to mess with and I am not joking when I say I have had to pull the car over before and take a nap from spiked pain levels.

After I get dressed, and don’t feel like I need a nap, I make my decision. If I am able, in any way, to push myself to be out for awhile, then I do.

Many times, this can depend on the activity. For example, a day of shopping is in and out of the car over and over and over. That is a LOT of transfers! That wipes me out very quickly and increases my pain levels. So, on days I feel really bad, and the kids are just wanting out of the house for awhile, I would suggest a short version of shopping (y’all, pick a couple stores), or go to the mall or a shopping center where I don’t have to load and unload so many times. Or, I will suggest we go to the park or something where they can get fresh air and a change of scenery, but I am not having to do as much work to be out.

A day of bike riding, is actually pretty therapeutic for me…especially on days I feel rough. It is fresh air, sunshine and miles of just rolling along. The kids are ahead of me riding their bikes and there is much time for me to just have the quiet time to think, pray, engage and smile and talk to other people out enjoying the day, take in the beautiful scenery and listen to the birds sing. Yesterday, a dear friend called and we were able to chat and it felt like we were on a walk together. The kids and I have our spots we like to stop at and just hang out at and enjoy.

I always know that a long day out typically means another rough day for me the next day; but, I also weigh that out and plan for it. A day out today absolutely means a low key day the next. I have learned that if I push myself for days in a row, I will pay for it by having to be in bed way too much for a couple weeks and that is no good for my family either. Balance is necessary.

I decided long ago that I cannot change this life I have been handed. And if this is my life, I don’t plan to stop living it. Rough days are rough…no doubt about it. But what would be even rougher on me, is to stop living life with my precious children.

Truly, there are still times when I have to say, “I’m sorry guys…maybe tomorrow”…because I just can’t get it together and need to be home. But I make myself be very honest, disciplined and challenged to make sure that is true. It is too easy to let my body be the boss so I keep myself in charge of those choices and don’t allow myself to take the easier way out. I owe that to my children!

Yesterday, I woke feeling awful. I showered. I got dressed. I decided I would take the kids bike riding. We went all day. It was so beautiful. So relaxing. Such a sweet day of memories, ice cream, people watching and Caleb was even able to join us after work since he was close by. I am so thankful that I was able to go. We came home. I made supper. I was in my bed by 8:00 exhausted, in pain, and very content with our day.

Today it is raining, I feel awful and I can stay home nice and cozy in my home…and very probably my pajamas…all day…and can rest from yesterday. The kids will be tired too and I expect us all to enjoy our “pajama rainy day” today. Oh the perks of homeschool!

I cannot speak for everyone that deals with chronic pain in their lives, but for me, this is what works. This is what enables me to not only live my life, but to enjoy it. That matters!

Try anyway. Start with one step and then take another. See how far you can get. That’s it. Find joy and challenge yourself to get there.

I was working on a couple new videos for my YouTube channel today and the similarity to what I was “educating” on for spinal cord injuries, and the comparison to real life is too obvious to not mention.

In my 2-part video set, the first video deals with paralyzed core muscles and how that makes us very off-balance because we lack the core stability to keep us upright. It is hard to find your new balancing point and you definitely have to have some external supports in place to be safe.

Does that sound like life at times? Uhm…yes!!

Life can be very upsetting. It can topple you over in a second. You are left very unsteady, and you aren’t even sure which direction you need to head. You are so off balance, you can’t even function in the simplest of ways.

This is where you need external support. Physically, for me, that means special seating and cushions and the angles of my wheelchairs. But spiritual and emotionally, this means our precious Savior and dear friends that love Jesus supporting and rallying around you. It stabilizes. It allows you to stay out of bed each day.

The second video has to do with having a “quad gut”. It happens when your core is paralyzed and there isn’t anything you can really do about it.

And have you ever felt that way? Circumstances that happened that you didn’t choose? You didn’t want? But it happened TO you?

What are you doing to do? Hate it? Detest it? Fight against it?

Or are you going to release whatever it is and just learn to embrace the “less desirable” areas you had nothing to do with and are powerless to change them as a part of the new you?

This new you can hold your head high. Not because your body (or life) is perfect, but because you have learned to accept things you cannot change and live in peace with it.

I hope as you watch these two very “physical” videos, you will come away with the same comparisons to our spiritual and emotional lives and how balance and acceptance are choices that only you and I can make.

Trust me, the rest of your life will thank you.

Video 1: “A Paralyzed Core & Finding Balance

Video 2: “Quad Belly/ Para Gut – What Is It?

My morning begins with trying to roll over first. Then some stretches of my upper body, my fingers and my hands. After I am loose enough to be able to sit up, I do my leg stretches the best I can.

Next on the agenda?

If it is a bowel program (another subject) and shower day, I get that process going. That is about every other day. I will get my supplies, do my thing, get finished, go shower, and either get dressed in my wheelchair (which takes a long time) or I come back to my bed and get dressed. It all depends on the day, the outfit (some are much easier to get on and off), and how spastic my body is or not. That whole morning process takes me about 2 hours or so. And this is why I don’t shower on the days I have an early appointment!

However, on the other days…the days I get to just wake up and get dressed (much easier and shorter mornings!), I have this routine! It saves me a transfer and has made my mornings to be a little easier. I save time and energy!

Here is what I do:

Sometimes I wonder why I post videos and write blogs. I know it is therapeutic for me to just write and talk things out…on paper or video. I know it is because I just want to help others. I have learned so much about how to live my life in a wheelchair from other YouTubers, that I wanted to give back also. When I get comments or email from other people with disabilities or from occupational and physical therapists telling me I am helping them, that just thrills my heart!

But this time…I made a video and someone reached out to help me!!

It was about transferring into my bed at night, and my friend Roberta, who also uses a wheelchair, wrote me. She told me about this item on Amazon called a Transfer Sheet ( I had never heard of this) and she told me to buy one and it would be a huge help.

I bought one that day! They are around $25. Was she ever right!!!! It is wonderful!

I will let the video show you the rest!

I have a little ritual I seem to go through every night to get my body ready to sleep. If it is a good night, I am able to fall asleep very quickly. If it is a bad night, I tend to doze off quickly but then wake up within the hour with nerve pain and stay awake a lot. Making sure my spasms can get calmed down, using my CBD oil and staying warm under my electric blanket are all ways that help my body calm down so I can rest.

A perfect night…

1. I transfer good.
2. My spasticity isn’t bad and that allows me to position my legs and body much quicker because it isn’t fighting me.
3. I can get on my right hip and rolled to my stomach without triggering a full body spasm.
4. I enjoy my stomach stretch for about 10 minutes and then roll on my left side, cuddle my pillow and go to sleep!

Those nights only take me about 20 minutes from transfer to sleepy time.

But, most nights just aren’t that perfect..especially in the winter. Tonight’s total time took about 40-45 minutes, and if I would have changed into my pajamas, that would have added another 15 minutes easy the way my legs were fighting me.

It isn’t pretty and takes forever but I am doing it independently!

I have realized being proud of your accomplishments is not the same as having pride. God created the world and every day He would look around and say that “it was good” and He is not prideful.

Even though I truly dislike the “routine” of going to bed and how long everything takes when I…am…SO…tired…I am thankful for the outcome. I am thankful for the ability to do it. I am thankful for my independence still.

Let’s all look at our challenges as opportunities for accomplishments that we can be thankful for.

Here is the video of me going to bed last night!