In March of 2009, while expecting my 6th baby, I contracted Transverse Myelitis - a rare illness that caused swelling which damaged my spinal cord leaving me paralyzed from my chest down. It has changed my life in many horrible and wonderful ways. I love to talk about it all. The good, the bad, and the ugly.
It is always raw and real around here as I share my work in advocacy and accessibility, my heart for the spiritual lessons learned, my music that speaks my soul, and my love for my home and family.
Welcome.
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! 🙂
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! 🙂
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!
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!
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:
Those are the most common categories that deal with chronic/phantom nerve pain.
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!
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.
Ice Cream on the BridgeHappy that big brother joined us!Starbucks Patio…one of our happy spots.
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.
It has been a difficult couple of years and this blog has taken the hit of it. I am ready to get back here and up my game again. I have continued to write, but it has just been private. For me. Maybe one day, I will share more, but for now, that is how it just had to be. I appreciate all of you being patient with me.
I am kicking off a new look for this blog, upping my YouTube channel activity (you can check my channel out here!) and will probably try my hand at connecting all of this with Pinterest also! I am very excited and ready to roll (pun absolutely intended)!
Alright, here is the new YouTube intro video. Enjoy!
Alicia Reagan 