Mike arrived at the hospital with Taylor and Emilee. While Mike talked with the doctor, the kids came over to me and tried comforting me, even though it was apparent that they were the ones needing comforting. Tears running down his face, Taylor said “Mommy, you’re going to be ok! I love you so much!” I kept thinking about how lucky I was to have such brave kids. I can’t imagine what was going through their 10 and 12 year old minds, as I was unable to move or talk. I could tell that they were scared to death but they did their best to hide it so that I would not worry about them.
The tech came in and took me to imaging. They did a full body CT scan, an MRI on my brain and spine, and an X-Ray. I was transferred to the Neurology Unit, also known as Tower 6. The Neurologist looked over my scans and came in to talk to Mike. The results were all the same…they came back “Normal.” The doctor was dumbfounded. Over the years, I have grown accustomed to hearing those words, but how could my scans show nothing was wrong with me when I was trapped inside of my own body?
Over the next few hours, I started to regain upper body movement, thanks to the steroids needed to sustain life. My legs were still paralyzed and I still couldn’t talk. I had a shooting nerve pain that went from my left leg all the way up and across my back. The best way to describe the pain was that it felt as though my leg was hooked up to an electric chair and that pain would last for at least 2 minutes at a time, and then it would start throbbing. I was in constant pain, which drained my cortisol levels. My arms and hands were extremely weak, but I was able to communicate by typing on my phone. I understood everything that was said to me, and I was able to tell my Neurologist that I couldn’t remember how to talk. I tried screaming at the top of my lungs, but my mouth wouldn’t move. I could open my mouth….I could cough…stick out my tongue….but words would not and could not come out. How was it possible that after speaking for 39 years, I could not remember how to form one word?
“Well, the good news is that you didn’t have a stroke. The bad news is that you have something called Conversion Disorder, which is basically a neurological disorder which cannot be explained by medical evaluation.” His best guess as to why I had this was that it was caused by my severe PTSD when I had my major Adrenal Crisis in February and died 3 times. The difficult part of this diagnosis was that there was truly no way to know if I would ever recover. Would this be my new life?? Am I going to be confined to a wheelchair? Will I ever be able to tell my kids that I love them again? As terrified as I was, I put on a brave face with a fake smile so that Mike, my kids and my parents knew that no matter what the outcome was, I was going to be ok. Mike and all of the kids tried to trick me into talking but it didn’t work. Austin suggested sign language but since none of the family or nursing staff knew sign language, I was left with communicating with my phone. That was becoming my new reality.
Day 4…Tuesday morning came and I woke up in severe pain, just like every morning that I had been there. My nurse came in and asked how I was doing, expecting to have a pre-written message on my phone. “Well, Jose-Nicholas, I’m in a lot of pain. It woke me up and….oh my gosh…oh MY gosh….I’m TALKING!!!!!!! I can TALK!!!!!! My voice is back! Oh my gosh, I CAN TALK!!!!! Can you hear me?????” He laughed, with a joyous laugh and said that he did hear me but didn’t want to say anything until I recognized that I could speak. It was a miracle! I couldn’t remember the last time I felt as happy as I did at that moment. I was so excited that I called Mike, knowing that I would be waking him up and he was expecting it to be a nurse with some bad news. When he answered the phone, I could hear the panic in his voice. “Hi babe! I can TALK!!!!!” He was ecstatic. I could feel his excitement through the phone. He told me that he would quickly get ready and come straight to the hospital. We hung up and I asked if I could be transferred to my wheelchair. I had made good friends with a couple of CNA’s and I knew that I had to tell them the good news! The nurse called my CNA and new found friend, Yajaira, who I called YaYa. She came into the room and I excitedly said “YaYa, I can TALK!” She gave me a huge hug, as though she had just won the lottery, and hooked me up to the hoyer lift to transfer me to my wheelchair. She wheeled me around the Tower 6 floor so that I could go say hi to all of the many nurses and CNA’s that knew me. Mike came in and it was time for shift change, so I had a whole new set of nurses and CNA’s to talk to. My CNA friend, Jennifer, cried when I said hello to her. Both YaYa and Jennifer had been following my blog posts and I would send them text updates on my progress, which they shared with my other nurses and CNA’s. It was so nice to make new friends. I normally always have such nice nurses and CNA’s but to make friends with them that I knew we’d be lifetime friends was such a blessing. The one thing that we had in common was the beauty of nature. Every night, we all took pictures of the sunset and every morning, whoever was here, we would take pics of the sun rising. It was so blissful. It literally took me away from the horrible reality of the possibility of not walking again.
My Neurologist and my doctor suggested that I be transferred to the Inpatient Rahab unit. I had already had people from the Psychology team and the Physical Therapy team come and speak with me. It seemed like the best possible next step in my healing. Mike was desperate and didn’t have faith in the care plan. He went to my chiropractor’s office to speak with them. Dr. Allen was not there, so he spoke with his son. Knowing that Dr. Allen had provided miracles before, he was sure that he could get me walking again. He asked about getting me a pass to leave the inpatient rehab, not only for going to see Dr. Allen, but my stepson, Devin, as also getting married that Saturday and I very much wanted to attend, even if it was in a wheelchair. Mike conjured up a perfect plan and included my Dad in it, so that no one would know what we were doing. The only challenge that we faced was how to get me in and out of the Tahoe, along with the wheelchair that did not fold up.
I’ll be perfectly honest. Mike had more faith in me being able to walk again with Dr. Allen’ help than I did. I was so nervous that his plan would fall through that I actually tried talking him into postponing our “road trip” to see Dr. Allen. I had several emotions. The biggest one was what if Dr. Allen could not cure my paralysis? Mike was literally placing ALL of his cards on the faith that Dr. Allen could heal me. And even though I had a lot of faith in him as well, I was left with the “what if’s” of the situation. Never for a second did I not think that I would walk again. That thought never crossed my mind, even though it had crossed the minds of Mike, my family, my doctor and the care team. I was scared to death of Mike placing all of his hope on Dr. Allen to heal me, and so many thoughts crossed my mind about what would happen if he wasn’t successful. A few months back, he jokingly told me that if I was ever confined to a wheelchair, he would leave me. Naturally, those thoughts raced through my mind. Am I going to lose my husband, my best friend, the only person on earth that I 100% feel connected to, along with my stepkids, especially Emilee, whom I love just the same as my kids I gave birth to? My cortisol levels dropped as I was in panic mode. I had to ask the nurse for extra Hydrocortisone, since a normal person’s body would just produce more cortisol in this situation, but mine was depleting quickly.
I was so torn in this situation. I knew that Dr. Allen had performed miracles for me before, but what if he couldn’t this time? How would Mike react? He was placing ALL of his belief in him and I was nervous. I spent hours upon hours thinking about it. I knew that I was about to be transferred to Inpatient Rehab and although I didn’t have high hopes of it working, I felt more comfortable with that failing than I did with the idea of Dr. Allen failing. My only concern at that moment was the emotional well being of Mike. I made very excuse I could think of to talk him out of “breaking me out” of there. Even if there was a1% chance of him not being able to fully help me, I didn’t want to risk Mike’s spirit. I was in a Catch 22. I desperately wanted to walk again, but I was afraid that if Dr. Allen could not cure me, Mike would lose his spirit, which drove my ambition.
On Saturday, I was handed my daily schedule. It showed my eating times and more importantly, it showed when I had PT and OT. I was nervous, to say the least. I knew that this was going to be an uphill battle. I felt ready, but at the same time, I felt incredibly scared to death. My first few sessions for the day were just evaluations, so I took comfort in knowing that I wouldn’t have to push hard. The first Physical Therapist came into my room and introduced himself to me. His name was Aaron. He was kind and gentle. We started talking about football because of my Steelers blanket and the Steelers shirt I was wearing. He was not a football fan, or a sports fan in any way, but we were able to joke about it and laugh.
Aaron then started talking about the goals for me for PT. I sat up straight and was ready to get down to business. He said that PT’s goals for me were to be able to go home with the ability to go to the bathroom by myself and to get dressed by myself. I sat there, waiting for more to come out of his mouth. Nothing came. I said “Okayyyy….I thought that the goal was for me to walk again…..” He looked at me, tilted his head as if he was saying “Oh sweetie, you’re so cute for thinking that way…” and said “Well, we are hoping for the best, but preparing for the worst. My job is to get you to be able to function at home with the tools that we can provide to you.” I felt a shock come over my body. I thought the whole reason I was in the inpatient rehab was for them to get me to walk again. Never once did I ever consider, for one second ,that I would never walk again. My heart started racing and I instantly felt a really hot feeling flowing throughout my body. So many thoughts ran through my mind in an instant. I was scared that Mike wouldn’t want to be with me if I was confined to a wheelchair. I thought about how embarrassed the kids would be when I showed up at their school, unable to walk. I wouldn’t be able to go on our boat or be able to fish like I had been able to. We had just bought a Tahoe so that we could have room for all of the kids so that we could go camping and take trips. My hopes and dreams were floating in front of my eyes.
I started crying and said “I thought that the goal was for me to walk again…” Aaron looked at me, head tilted, once again, and said “Sweetie, like I said, right now we are hoping for the best but preparing for the worst. I’ll be honest….there is a very high chance that you will never walk again…..” I was speechless. Tears started running down my face. No words came out of my mouth. All I could do at that very moment was blink twice….for NO!
….to be continued.
2 thoughts on ““Blink Once For Yes, Twice For No…Part 2…””
Well written Jen, Its as if we are there with you. My heart aches with every twist & turn in your journey.
That damned feeling of being trapped in your own body is excruciating!! Thank goodness your body is healing & you can move forward. You are so blessed to have a strong support system. 🌞
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Thank you, Michele! I feel so wonderful now!!