9 Years Paralyzed Today

Here we are again – March 12th. This day, 9 years ago, I woke up from a 24 hour nap…completely paralyzed. No feeling or movement from my upper ribs down, my arms SO heavy and stiff and slow to respond. One day you are fine, and one day you are not. Just that quick.

Today is my anniversary. The day our world turned upside down. The day I choose to remember and to reflect on where this journey has taken me. Will you join me?

I think if I could break down the last 9 years it would look like this…

Year 1 – I barely remember! Becoming paralyzed while 5 months pregnant, a million doctor visits, hospitalizations, the birth of my healthy baby boy, multiple complications, and finally the start of therapy. It is all a gigantic blur with lots of tears – sad and happy.

Year 2 – Therapy!!! Occupational therapy, physical therapy, repeat over and over and over. This year was driving 500 miles a week with 6 children, 10 and under, and a precious hubby who would sit for hours in a waiting room with all of those kids while I had therapy. I couldn’t drive so he drove me. We didn’t live near family and you don’t want to ask people to babysit your 6 children (including a baby) 3 times a week for multiple hours a day. We drove  1 1/2 hours to therapy, were there for 2-3 hours, and then 1 1/2 hours home. I would be so worn out, I would sleep all the way home and the rest of the day once home. I was absolutely exhausted. I worked so hard in therapy trying to get every ounce of return I could. It did help and I learned so many new things and much independence to take care of myself. But…not much physical return. Which led to year 3.

Year 3 – one of my toughest years. Therapy wasn’t seeing anymore progress in me so I was done. And I was ready to be done. I wanted my “normal” life back with my family. But that normal was a new normal and now it felt really permanent since the paralysis hadn’t gone away after all that therapy. Emotionally, this was my toughest year although I was feeling much better physically. I was learning how my new body worked and how to read the signs it gave me. I learned how to deal with many of my physical challenges and some of the fear and anxiety had really calmed down. I also finally got a very good neuroimmunologist  that year that completely understood my spinal cord injury that had been caused by Transverse Myelitis and he taught Jimmy and I so much. I think Year 3 was a year of emotional transition for me from the old “able-bodied” world to becoming a full-fledged member of the disabled community. It was a rough year of getting through that process, but I finally found peace in that future.

Years 4-7 – Life continued. We moved from OH to TN to SC as Jimmy’s pastorate changed. We made new friends, kids kept growing up, we had victories and failures in our marriage, our parenting, and our Christian lives. Emotionally, things were very good. I became much more involved in the disability community and made many dear friends. Opportunities to speak and share my testimony started pouring in and kept me very busy! Physically, I had a few things come up that is common with spinal cord injuries but nothing major. Life is beautiful and we love living it!!

Year 8 – Some physical changes. I have always dealt with spasms, nerve pain and fatigue, but this past year has been the worst. And…it has really affected my upper body strength. My spinal cord was damaged at the C5-C7 level which is in your neck. It was caused by swelling and so I am considered an incomplete injury – which means some nerve signals DO get through. They can go through really slow, or really confused, or really painful, or they might even actually work!! If I had a complete injury and NO signals went through, I would have very little use of my arms at all. So, I am very thankful for all I can do with my upper body! But, I can tell a big change in me this year. It has been very troubling for me as we have been trying to figure it all out! Is pain causing the fatigue and weakness? Is fatigue causing pain? Is something going on in my body I don’t know about (because I can’t feel normal) and that is causing spasms? Are the spasms causing the pain or is the pain causing the spasms? Am I fatigued because something is wrong or because I am not sleeping good because of spasms and pain? See how confusing it is?!!! It is also really frustrating!

This past year has had me in bed way too much just because I cannot physically sit up in my wheelchair for too long. I can’t even sit in my living room chair because the nerve pain and spasms just get so bad. The only thing that eases it up is laying down. Thankfully, it is not every day!! But it has put a major damper on longer activities because I just cannot tolerate it.

My arms (especially my left wrist and fingers) are much weaker. So…my activity level has been down because I just haven’t been able to lift weights or do too much active because it causes such pain and just flat out wears me out and I am shot to do anything else. So, that has been a bummer. When I try to push myself and power through it, I end up paying dearly for days. So, Year 8 has been a year of many doctors visits and tests trying to make sure things are okay and trying to figure out what is going on and what we can do about it.

I am happy to report that that this year ending has been much more encouraging than it began with a wheelchair seating evaluation about 3 months ago. We finally feel that we have some answers. Also, I have a dear friend who is a physiatrist (a spinal cord rehab doctor) and he has been working with me to figure some things out. Dr. Chris is retired now, but is a wealth of knowledge and has helped me sort through some problem solving and solutions to try and work through with my family doctor. My family doctor has also been so supportive to explore all avenues.

I already wrote about what the physical therapist/seating specialist felt was my issue with my current wheelchair no longer giving me the support I need and this leading to overuse of my already weaker upper body muscles. This was backed up by what Dr. Chris told me he thought was going on. I felt that with both of them telling me, they were probably on to something. (You can read the full post about it here)

So, this year, Jimmy and I decided that I needed to take this year off and just rest. He has been saying it, several dear friends had been telling me to slow it down, and then my own body. No speaking engagements (other than 1 in the fall when we have family vacation and 1 local) this year. I think I have said “no” more this year than I have in my entire life! It has been hard, but SO wonderful! Our church has been amazing to just jump in and take such a load off of me. It is VERY hard for me to not be in the middle of everything, but it has been SO nice to not have to. 

The other change is that I have also started using a power chair more if I am outside on rougher terrain or for a long day or evening. Dr. Chris and the therapist both strongly recommended it. I was gifted with a very nice power chair that reclines and has a tilt feature. This may sound silly, but when you are in SO much pain you cannot endure sitting one more second (I feel like I am sitting on a huge pile of sizzling hot shards of glass from my lower back all the way to the heels of my feet) and your only option is to get in your bed, the power chair has been wonderful!!! I just tilt back and get all the weight off of my backside for a little while and it is just like laying in bed! The pain starts easing up to where it is bearable again and I am good to go! NO BED!! It has really been quite amazing for me. And…I can tell it has made a HUGE difference which further proves what the seating specialist says. I do believe that when I get my new manual wheelchair with better supports to hold my body in place that it won’t take such a tremendous amount of work to get me from point A to B which in turn should help my pain, which I now think causes my spasms to get worse,which makes sleeping very hard, which exhausts me. It has been a vicious cycle this past year but I truly feel there is a light at the end of the tunnel!!

So, to Year 9, I want to say….

  • The first year of this ride, I didn’t think I would even live to see this year, so I am thrilled I did!
  • I am okay with this being 9 years. It’s such a wonderful journey – even through the rough times. Life is a precious gift!
  • You and I are going to make it just fine, Year 9, if the Lord wills.

Thank you, dear readers, for following my journey with me. Thank you for your friendship and support. Thank you, most of all, for your prayers for me and my family!

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One thought on “9 Years Paralyzed Today

  1. Alicia, since I have known you, you have been an inspiration to me! Here I am an able bodied person who doesn’t give half as much! Oh the things we take for granted! I’ve given much thought to your situation, and again, you inspire me. However, I think we sometime don’t realize how difficult it is for you because you are so determined, you are so involved, and you’re always pushing yourself. Thank you for sharing your journey. It is eye opening. I think I might have given up if I were in your shoes. You are so blessed to have such a supportive family! We are all blessed, no matter the battles we have. Our Lord is sufficient in our needs as we know as Christians! We battle with the mortal side. Take care of yourself Alicia! Slowdown! You will remain an inspiration to me even but in your words. Love you!

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