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!