Road Blocks: How it all began...

Life's roads have many twists and turns. Sometimes we even end up retracing our steps. There are accidents to avoid, unexpected detours and sometimes bad weather to endure or avoid. But occasionally, life takes a 180 degree turn that we never see coming. There are no warnings and more importantly, no way back. The bridge washes out. There is no way to get back to where you were. That is when one life ends and another begins anew.

For me that began on September 7, 2016. It was one of those dates that are so life impacting that you remember the date with vivid detail. I was 7 days into a new job as a special ed teacher at a new district with a new principal and new superintendent. Lots of "new".

I spent that day as I had all the previous ones; racing at a fever pace trying to accomplish two days work in one as I tried to familiarize myself with the new layout, rules, caseload and staff. I went to my parents after to work to check in on them as they are in their 80's and have some health issues. I actually got there before dark, so I felt accomplished. I took off my normally comfy shoes that had been bothering my feet throughout the day. Rather than a relief of pain I was met with a whoosh of pins and needles feelings as if my foot had fallen asleep. But it was both feet.

Odd, these shoes are usually very comfortable. Did it have anything to do with when I moved a large stack of books up some stairs earlier in the day? Did I pinch a nerve? Great. I don't have time for this. I went for what would be my last soak in my parent's pool for the season hoping the cool water would soothe them. Nope. That didn't help either

After returning to my house, concern filled my mind. I had dealt with an autoimmune condition affecting my hands and joints over the last 10 years. I knew all about the concept of new normal. I had finally gotten the upper hand between meds and weight loss and felt the best I had in decades. New me was strong, in shape and I liked her. I was following my dreams. I had moved back to NH, was close to my parents and started my own children's museum, a long time dream, and I was proud of it. I had done most of the work myself. I tackled whatever needed to be done. Sometimes, it was with a deep breath and sometimes with off colored words, but I got it done. My last unpleasant task was doing a roofing job at my folks. Not a job I enjoyed or wanted, but still, when it was finished, I was proud of myself. Would I still be able to be this same person, and be strong and active? A small voice within me whispered no. Somehow I knew even then that life had changed. Please don't let this be my new normal. Please don't let this be my new normal. I ignored it.

Thursday morning the tingling continued, and I continued to ignore it. By the evening, I could ignore it no longer. The feeling was progressing up my calves. Shit. Who do I even see for this? I don't have time for this! I have way too much to do! I went to sleep holding tightly to denial. Friday morning I was sure my knees felt weird, but again, I did my best to ignore it. I would just have to deal with it over the weekend. During the day on Friday, I was distracted at work. The sensations were increasing and really uncomfortable. My fears grew. At the end of the day I stayed to work on scheduling.  By 6:00 pm I was miserable, but still had one more load of personal items to bring into the classroom that were in my car. I have to get it done!  It was a major push, because by now I was having trouble walking, but I shuffled and waddled and got it done. I went home and collapsed in exhaustion. I'll deal with it tomorrow. 

By Saturday morning the sensation was advancing up my thighs. I thought about my options. I could try to call someone. Who? A doctor? A chiropractor? I was supposed to be teaching a crafting class Saturday evening for a friend. I can't cancel that. And if I'm not cancelling, I have to clean the house and run to the store and prepare snacks. I clung to the cart in the market like a walker, forcing my legs and feet to cooperate. Set up was completed, my friends arrived, and for a brief moment of distraction I forgot. Until I sat down at the end of the night, put my hands on my thighs and I couldn't feel my hands...

I didn't say much to my friends for fear of alarming them, but I resolved to go to the hospital the next morning. I was too exhausted now. Sleep could only help, right? But sleep was fitful. I tossed and turned and struggled to fall asleep. When I finally did, it was brief, sleeping only about an hour. I awoke around 3:00 am with my heart pounding and tingling in my fingers and lips. I was scared. It was time to go to the hospital.

At the hospital I was almost teary. NOT my normal tough girl persona. Not that I don't cry, just not usually with physical issues. Sappy movies, commercials, or animals, you bet, but not out of fear or pain. Maybe the doctor found that silly, because he sure didn't take me seriously. I was told I wasn't having a stroke and it probably wasn't MS. He said I should probably see a neurologist, but the wait to see one was long, but maybe my primary care physician could try to speed it up. He told me if I got worse I might consider going to a bigger teaching hospital because they have neurologists on staff. I was sent home. I got there about 5 am. As I walked into the house, I had the same nagging feeling I had since the sensations began. Please don't be my new normal; please don't be my new normal...

I slept for an hour and then woke up. Was I worse? I didn't think so, but I also thought the doctor was wrong. This was not something to wait on. I called my mom. She could come in and get the dogs. I would drive myself to the hospital which was an hour and a half away. Did I think I do so safely? Sure!  (Well, not that I would admit to anyway. Hey, it's not the first time I lied to my mother.) Fortunately, I had enough driving experience and cruise control so I could drive without my foot feeling the pedal and I made it to the ER parking lot safely.

This doctor did many of the same tests of the other doctor, but he took me seriously. I was sent off for two and a half hours of MRIs and I was admitted. What these doctors found that the other didn't look for was a lesion on my spinal cord that was causing the parathesis. It was imperative that high dose IV steroids begin ASAP to reduce inflammation and hopefully the damage. By now I was no longer able to sense bladder function or feel the shots I was given at my waist. My day ended with a spinal tap

I was diagnosed with Transverse Myelitis, a rare neurological disease with no cure. Talk about a road block! I was in the hospital for 5 more days, receiving the IV meds as well as receiving OT and PT support for my now uncooperative legs. I thought I could push through it like I had with other illness or injury I had experienced. I thought I'd go right back to work. It turns out that bridge back to normal had washed out. Life had made a 180 degree turn. This WAS to be my new normal, for at least the foreseeable future.

That was the beginning of a new journey back that would travel through dark nights, steep valleys and icy cliffs. The journey hasn't been easy. But when the road washes out in front of you, it's no good to just sit and wait to see if someone will come and rebuild it. You have to blaze a new trail, or find someone to help you build it. The journey never happens alone. The first step is getting up and making the decision to take the first step even though you don't know where you are going. It isn't easy, but you will never get anywhere else until you do.

​It's time to start this new journey. In this story the ending comes first and the beginning is what happens next. And as it unfolds, I'm happy to share my story with you. It's told with honesty as a way to explain what it's like when life changes so drastically. It's a way for me to process and chronicle life as it changes and reinvents itself. It is not an easy path, but it's one where hope is found in the most unexpected places along the way. Life may have taken a 180 degree turn, but the lesson is that there is HOPE to be found all along the way through the victories and the struggles. Thanks for coming along the journey with me. ​​

Categories

All
Diagnosis
Disability
Hope
Multiple Sclerosis
Transverse Myelitis