My Story

As I look back over my life, it is so obvious to see the hand of God working. Things seem so clear in hindsight but when you are living them, they can be mighty fuzzy! I was born into this world on April 28, 1977. I was raised in a Pastor’s home and I had the honor of being a PK! I realized that I was a sinner and deserving of hell when I was 5 years old and I trusted Jesus as my Savior. I was very excited that day about my name being written in the Lamb’s Book of Life, but it has taken many years and some trials for me to realize the depths of that decision on my entire life.
When I was 16, my sister and I attended a camp and I can see how God really used that week as a spiritual turning point. It opened doors for us that we never knew existed. For one, we learned about Crown College and my sister enrolled for that semester. I followed in 1995 and have never regretted that decision. I met my husband in the single’s department at Temple Baptist Church in Powell, TN. When we were married, he was a bank manager and we were thrilled to be serving God together in our church.

After we had been married a couple of years, God called my husband into the ministry and in 2003, he took a pastorate in West Union, OH. We moved away from our families with three small children and were able to be full-time. The church was really struggling at that time. Our salary decreased by about 75% but what we grew in faith was far more valuable than money! We saw God do miraculous things and our faith grew by leaps and bounds. Our first daughter born in Ohio we used “Faith” in her name as a testament to what we had witnessed God do. God was at work in our church and in our lives. Our faith was so very strong – so we thought!

On March 12, 2009, life as I knew it dramatically changed. I had been experiencing a lot of neurological problems and was expecting our last baby. The day before, I was in excruciating pain and had spent my entire day in bed. I actually have only one or two faint memories of that day and when I awoke on the 12th, I was completely paralyzed from my ribs down. I had no feeling or movement at all. My arms felt like they were so heavy! Because I was pregnant, they were not able to do testing or strong doses of medicine because of the risk to the baby. I was told that we would just have to wait and see.

The days and weeks that followed seem such a blur to me. Trying to relearn the simplest tasks that I just took for granted. Learning how to roll over in bed, sit up, shower, dress, bathroom, get from point A to B, get in a car, avoid steps, and how to live life from a wheelchair. There is not one aspect of every day life that paralysis does not affect. My simple routines that used to take only an hour were now taking me an entire day! By the time you finished getting up and getting ready for the day, you were so tired and worn out you just wanted to go back to bed! My husband cried a lot and I would try to make him laugh – telling him that we would learn. As the weeks turned into months, it all hit me more and I would cry and he would make me laugh – reminding me that we would be okay. I made the decision on the first day that my precious children were watching me and they were going to learn how to handle trials in their lives by watching me. I decided and told them over and over the first few months that we would stay faithful to God even when we did not understand and we would be happy. Overall, we have been happy and I thank God for the unselfish love of my husband, children and church family.

Our baby boy, Elisha, was born healthy on July 27, 2009. I had many complications after he was born. There were a few times, I was really not sure if I would live through all of it. I asked the Lord a lot of questions during that time and came to my closest time of seriously getting discouraged. I felt very guilty that if I was such a strong Christian then why did I have these questions and fears? There were days I would cry out “Oh God, please be real to me today!” and something little would happen that would let me know that He had not forgotten about me. There was nothing that could comfort me like pouring my heart out to my Heavenly Father and the peace that would flood my soul was truly beyond understanding. I still did not have the answer to my questions, but I knew that I had Him and that was enough.

Nothing can raise my dander quicker than for things to be scattered across the floor and I can’t roll through a room without having to move item after item. It hinders me from getting to my destination. So it is with life. God has a course that He has set for me and for some reason that I know not, paralysis and living in a wheelchair is part of that course. He has given and will continue to give me the grace that I need to live within that bond. However, the things I bind myself up with and scatter across the floor of my life are not from God – they are from me. These can greatly hinder me from a smooth trip to my destination. What are some of these bonds? A negative attitude, a victim mentality, a sour disposition, a questioning spirit and a complaining heart. You see, this wheelchair is not what has me bound. It is not my cross that I have to carry. The thing that will bind me and the cross that I have to bear daily is Alicia Reagan. She is the one that I have to deal with the most – more than the many facets and difficulties of paralysis. She is the one that will either give God the glory for her life, or give in to the temptations of Satan and ruin God’s plan.

I was diagnosed with Transverse Myelitis after going to a neuroimmunologist at Ohio State University. My spinal cord was damaged at the C5-C7 vertebrae level.  TM is a virus that attacks your spinal cord and the inflammation damages your spinal cord just as a bone fragment from a broken neck or back would do. It is a bad day in history, but I have been stable for over 6 years and they feel that this is not progressive. I have regained a little movement in my hips and can move a toe on a good day but still have no feeling. My arms got stronger and my hands work fine unless I get really tired. I do not know if I will ever walk again physically but I know that He is with me and even though the outward man may perish, the inward man can be renewed day by day!

My prayer is to not doubt in the dark what I have known to be true in the light. My prayer is to continue to trust the Shepherd that has so lovingly carried our family through some very dark shadows. My prayer is to allow the fears of the unknown that I sometimes feel to be the fuse that will ignite an explosion of faith. My prayer for all of us is to stay faithful and look forward to the day that He will say “Well done!”

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13 thoughts on “My Story

  1. Alicia,

    Your story is very inspiring and left me feeling happy for you that you are in such a good place in your life.

    My name is Brittany. In 1998 when I was 12 years old, my dad was in a car accident that took my younger brother’s life and left my dad a C6-7 quadriplegic. Since then, I have endeavored to make a positive impact in the disability community.

    I would like to share with you a new spinal cord injury resource that my friend, Josh Basile (a C4-5 quadriplegic), and I created called SPINALpedia in hopes that you might be willing to post about us. SPINALpedia is a video sharing social network with over 2,600 videos filtered by physical functionality that allows people affected by paralysis to connect and share how-to videos to help others get their lives back on track.

    Through SPINALpedia we hope that everyone affected by paralysis will know that 1) they are not alone and 2) their life isn’t over. We also aim to positive impact dismal statistics about life with paralysis and redefine social stereotypes by motivating more people to take back the ownership over their lives. As people reach whatever level of independence is attainable while improving overall quality of life, more people will get out of their homes and return to the workforce and school as active members of society.

    The best chance we have at being successful is by having people like you help us by spread the word. If you are willing to post a pre-written blurb on your blog, let us submit a post as a guest, or otherwise have any interest in helping us publicize our work, we would greatly appreciate it. Let us know if you think it would be possible and we look forward to talking to you!

    Best regards,
    Brittany

  2. Thank you Alicia! Would you be willing to post a pre-written blurb on your blog, let SPINALpedia submit a post as a guest, or publicize any pieces of our work that would be wonderful. I am just trying to spread the word about SPINALpedia as I feel passionate about helping others affected by spinal cord injuries and I’d like to raise awareness about our site.

    Thanks again.

  3. Hi, I’m a 13-year-old girl, from India and I happened to come across your blog. I just wanted you to know … I think you’re amazing! And you’re such an inspiration! Seriously, your cheerfulness and happiness that is evident through this blog is contagious. You just made my day and made me smile. Cheers, and lots of love! 🙂 ♥

  4. Bless your dear heart, Alicia! I was so blessed by coming here today. I actually “stumbled” upon your blog, as I was googling information about paralysis. I am so grateful to have found you and have the privilege of reading your inspiring testimony. May God bless you!

  5. I’m a incomplete paralyze I feel back word in my bathtubs and came very close of severing my spinal cord. But before all that I was born with spinal stenosis and other back problems.

  6. Alicia,
    I found your story on the To Love, Honor and Vacuum page. Although I am not paralyzed, I do have some of the similar pain issues you described. I have had gynecological issues since I was 14 – now 41 years later as a 55 year old mother of two, grandmother of 4 I find myself separated from my husband due to the issues that has caused our marriage to be so toxic.

    I was not always a Christian and did not understand the plan God intended for sex to be between only ever one and one woman. I say that to tell you that while a teen and up through the first probably 10 or so years of the marriage to my now second husband, my sexuality was never an issue of inability for any reason under the sun nor were the desires.

    At the age of 20 was married to my first husband. Shortly after our first year of marriage I had a miscarriage and then at about 3 1/2 years into our marriage God blessed us with my first blessing, our son Michael – now 30 years old, married and father of 3.

    The separation occurred when our son was 15 months old. At age 30 I was married to my husband Steve. After a year of not conceiving we began some infertility treatment and shortly after got the great new that we were going to be parents. Now 32, I had the typical pregnancy and typical V-Bac delivery. Over the next few year and desiring to have more children, I had four miscarriages – one far enough that I was into maternity clothes. Then, at 35 years old, in year 5 of my marriage, I noticed the symptoms of early onset menopause. Hot flashes, irregular periods, sometimes shorter and usually now heavier and more painful and the mood swings were probably the symptom that affected me the most.

    At age 37 I was diagnosed with severe endometriosis while having bladder sling surgery. At that time the surgeon opted to put my body into drug induced menopause to reduce the endometriosis and relieve the pain and symptoms but would not agree to perform a complete hysterectomy as I was too young to remove my ovaries – which would and in the future has caused a whole new onset of problems. This time frame was when my husband insisted on getting a vasectomy.

    Now fast forward to age 42, a new OB/GYN after some other treatments and exploratory treatments agreed it was time for a hysterectomy. Fast forward again a few years. The discomfort and dryness now had become a great issue. That same doctor that performed the surgery said that my vagina was atrophied and that of an 80 something. Well, great now just what I wanted to hear. Being that my diagnosis of endometriosis was the cause of much problems that resulted in a hysterectomy, I was not a candidate for hormone replacement therapy. No suggestions except to use lubricant. Well, that was nowhere near sufficient. So, after PT, other non-invasive and some invasive procedures, an extramarital affair on my husbands part – and then and now his unwillingness to continue with marital counseling, I have found myself in a toxic mentally and verbally abusive and neglective relationship with no end in sight without counseling.

    As recent as last evening, when I had proposed the Focus on the Family ‘Hope Restored’ intensive marriage counseling retreat, he let me know he is not interested in this and does not intend on going to couples counseling. I have recently been searching for something to read and grab hold of for help in my situation. Your article has been the closest to that. The feelings you described in relation to your sexual intimacy with your husband is a mirror image of where we were and what got us to where we are. I am just so perplexed that he is not be willing to go to counseling. I know we are not to question another person’s salvation, but I truly feel that there are definite spiritual struggles he is dealing with. I am just scared now as I am up against needing to make decisions on how to move forward. With the separation, where it was my choice to move out, I have a time frame I have to consider where legally I have the right to be receiving spousal support. The time begins at time of separation. I have not filed for legal separation or spousal support. I have been a stay at home wife and mother now grandmother all of our married life and I need to prepare myself if this marriage is not repairable for financial reasons. I am so torn. I do not want the marriage to end yet I do not see it able to continue without much counseling and support.

    I just now sat and looked up at the ceiling and asked myself, “What am I asking of you?” – I do not even know what my intent was when I began typing all of this. I guess bottom line, I would like to know how and if where you sought counsel. This situation is a unique one. I need to know what to do for us?

    • Thank you for sharing your story. I know it helps to talk things out and I am glad you felt safe to do that here!!

      My simple advice in a nutshell is to find a marriage coach. Google Christian marriage counselors in your area. I would recommend a man as most men listen to other men better than women. I would also ask if he would consider marriage coaching (instead of counseling). Men like coaching better. 🙂

      I think you need to be blunt and tell him that you can’t make him go, but you are going. Maybe ask him if he would like to find one and you will go wherever he chooses, or you will go alone.

      Your husband is not alone in the fact that most men don’t want to “share” their lives and privacy with anyone. So counseling is a big turn off to them.

      I believe that you all could be helped even if you went alone. At least all the decisions for your future can be checked with a counselor and those decisions will not be solely on your back.

      Praying the Lord guides you!

  7. Thank you for your reply. We have actually begin consoling just about 3 weeks ago together. It was after A tough brutally honest talk we had a lot of anger was still there. But I think he finally saw my heart how hard it was and agreed to go to counseling tomorrow will be our third session. I’m having a hard time being encouraged though. We spend time together with our grandson yesterday at an amusement park and I can say it was not enjoyable at all very few moments were. He does not expect our grandson to follow any rules or a bay much on a regular basis and then when he gets out of control or starts running he gets mad and yells Etc I’m more like tell him what’s expected make them hold your hand and he knows what’s expected of him and everything’s easier. Because I’m stronger disciplinarian of course my grandson turns more to him he’s the fun one. We had talked about making plans for today but in more than one occasion yesterday indicated he was going to wait he wasn’t sure if he felt like making plans for today. Initially I had planned to take her grandson alone and I wish I would have kept it that way because it usually becomes a lesson enjoyable time when the three of us go together because of our styles of dealing with him. He is a very intelligent good boy but my husband just doesn’t understand rules Etc. This has a lot to do with his life in general are relationship and how are children of raised especially our daughter as our son is his stepson and he was not as Hands-On he gave me the permission I suppose you’d say to handle things how I felt necessary. When it came to our daughter however his hands off approach for me was hard because he allowed her to make many mistakes and rather than learned by them fix them for her, which is frustrating because it has affected her life. Well tomorrow when we go to counseling I’m going to ask to talk about focus on the Family’s intense three-day seminar four marriages in deep trouble called restore hope. I think one hour once a week with the problems we have is very difficult to get through and make progress I’m very discouraged. He initially did not want to hear anything about it at some point he suggested let’s try it and just short of having the deposit made and him turning in his paperwork he refused to consider going. One of the things I think he is not interested in considering that direction is that I have indicated that we need separate beds at this point because I am not ready for an intimate relationship with him. I would just ask that you keep us in your prayers because we are past 4 months of separation and I’m not very encouraged in the direction it’s heading and it’s such an emotional roller coaster for me. I’m trying to not allow this get me into a depressed mode, but it’s hard. Thank you again for your reply.

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