I Too Shall Try My Best...

 WRITTEN 6/6/23

Well... Here we are once again but this time this moment has been one for the books. 

It has been officially one year since my first onset of MS related leg spasms occurred. It feels like I have been dealing with these tonic spasms for longer. This time my spasms made its appearance backstage shortly after I stopped performing my tap dance. I instantly knew I was flaring up when I felt my legs shake as I was exiting off stage. I made it to the backstage where my legs tightened, and I could no longer walk.

Let me share a little bit of what the week prior to the performance included which may answer some questions...

Our annual dance recital was set for June 3rd with two shows (3pm and 7pm). The week prior involved some very busy and chaotic rehearsals that last about 4 to 5 hours each night. These practices are held at the theatre to allow us to finalize lights, organize props and inform everyone on how the flow of the show would go. Students were present as well. It is like herding cattle with 50+ students from ages 2 1/2 to adult especially when you are not familiar with the students or their families. Throughout the rehearsals I had the opportunity to run through the tap dance I was performing in, but not once did I dance full out to reserve my energy for the long performance day. 

Before this week I spoke with my husband and told him that it hurt to wear my tap shoes and any quick movements instantly made me spasm. When I would walk through the dance with my tennis shoes (still not full out) I had less chance of the leg instantly spasm. We made a stop to a shoe store where I picked a pair of black shoes that best supported my feet. When we got home my husband took my taps off my actual tap shoes and quickly altered the bottom of the black tennis shoes so the tap shoes would be flesh with the sole of the shoe. He also took my fold up cane and decorated it with tape so it would complement my dance costume in case I felt like I would need it during my dance. 

I honestly am very thankful for my husband who is my biggest support. He knows that dance is my life, and he hears a lot about my struggles with not being able to dance like I used to. Since January I have worked hard with physical therapy to try and figure out how I could physically take an entire tap class once again. For a while, the tonic spasms put me on the sidelines. Eventually, I was able to take classes but also found which exercises or movements put me in an instant lock down. Many of times after a tap class I went home devastated because I couldn't tap, and the pain made me pay for even trying. 

My husband took it upon himself to ensure that my shoes were comfortable and secure so I could be on that stage. The support from my dance peers made me feel like I could do it even though many times       "I CANNOT" ran through my thinking process as I mentally prepared. When I did have those thoughts, I would remember what I teach my level 4/5 ballet class... We do not say " I CANNOT " we say " I WILL TRY". That is all that I ask of my dancers, and I too shall try my best. 

Rehearsal week was tough, and I started to notice a change in my energy levels. I did what I could to sit out on whatever was possible, maintain hydration and eat food for fuel. Thankfully the Friday before the show we had a day off. I definitely was dragging and having a tough time staying awake. Any moment I had to sit down I could feel the heaviness overcome the body. That was a sign that I needed to go to bed early in order to function the next day. On Saturday, I made sure to pack any and all items I needed in case of an emergency (Compression calf sleeve, magnesium lotion, Tylenol, ice vest etc). I put it in my red backpack that I take everywhere with me. My Saturday schedule started at 1pm. Once I arrived at the theatre, I began helping put together last-minute items and checking students in. Before I knew it our first show started and I was running around moving props, directing students and preparing for my turn to dance. 

The entire week of rehearsals I took my cane behind stage and had it ready in case but never used it (I did this for 3pm show). A part of me was working hard to not associate my cane with who I am. I work hard to put on a happy face and not let anyone know there is something wrong. I performed my dance the best that I could during the 3pm show. I felt like I was stumbling over my feet and messing up left and right. I did finally jump in my dance which was the first in a long time. I can definitely say I started to feel it and proceeded to take Tylenol to overcome the pain levels that were slowly building. I finished the afternoon show still standing on my feet. During out little break between shows I made sure to increase water intake and fuel the body with food. 

6pm, I made my way back to the theatre to prepare for our last show. I started setting up props and helping where needed. I was feeling pretty positive that I was going to make it through this entire dance event, but my body decided that it wanted to take part in the dance party as well. After intermission, I quickly put on my dance costume and got my dancers lined up for their dance because they were just before my dance. I got so caught up in feeling good and making sure that all of my dancers were ready I did not grab my cane. The show resumed and off we went. My music quickly came across the sound system and my legs quickly took off and nerves kicked in. I love the rush of adrenaline and being on stage. 

I was acing all of the dance steps and just in a really good groove but when I finished the 3 double legged wings (tap term) that involves jumping I instantly felt the change in my legs. It felt like my legs were giving out. I only had less than 30 seconds left of the dance, and I pushed through to finish the dance. Once I made it off stage and through the dancers lined up, I knew that everything took a turn for the worse. I grabbed the wall and slowly moved through the stage door, took 3 steps and then stopped because my body just started to shake and lock up. My right leg went into a full shake every step I took so I just froze. Thankfully the other dance instructors caught my moment of distress and helped me find a place outside where I could decompress and let the body run its course.

All that I really wanted to do was break down and cry. The flair up that I was experiencing has NEVER been seen outside of my house. The look of concern from students and backstage helpers was enough to make my heart sink. I talk a lot about my struggles, but no one has ever seen it until now. I had to swallow my pride and help guide others to lessen my symptoms. I quickly was reunited with my cane, someone helped me walk with the shaking and I got my body cooled down (bag of ice placed in vest) enough that my little flair up was less than 30 minutes. It was tough to keep a positive face and smile as I struggled to walk from the outside to the dressing room. The look on faces and sounds of student's voices instantly saying " Oh No! What happened? Are you okay? ". It all still runs like a replay through my mind.  All I could tell the kids is that I am okay and that sometimes things happen. Once my nervous system stabilized and everything calmed down backstage, I was able to slowly exit the theatre with the spasms using my cane holding my head up high.

It frustrates me when my struggles are seen by others. I still have others treat me differently because I have to adapt to certain things. When I was escorted to the dressing room after my flair occurred, I sat down in a chair that had a full-size body mirror in front of it. It was the first time that I have actually seen my entire body react. Majority of the time I only see my legs because I am curled up in a ball from the high levels of pain and all I do is cry. It was scary to see my muscles contract and entire body shake with each step. It just made me angry and overwhelmed to see my body act out of control. If I was alarmed by seeing my body move that way, I cannot imagine what other people feel when they see it. It feels like I have let down a ton of people which is a familiar feeling that I dealt with when I was first diagnosed. It is tough to tell others that there is something that stops you from being 100% and even harder to explain to kids that don't quite understand. 

I am very thankful for those that were kind enough to listen to my directions, be in the present moment and help me during my little MS flair up. I guess the flair up was inevitable, but I was able to live in the moment and do what needed to be done no matter what emotions were present. I still try hard to push my body to see where my limits are, and I have reached a point of no return once again. I am blessed to have had the opportunity to still be on stage and for the opportunity to adapt to a situation. Yes, I want to show the strong, positive and outgoing side of who I am, but this moment definitely dusted off the cover to my book so everyone can read this current version of my life. I have officially started wearing my heart on my sleeve which is tough to accept but it had to happen sometime. It is all a learning experience. 

My goal was to make it back on stage and I DID IT! I am emotionally, physically and mentally exhausted. My next step for this MS journey is to attend my 6 month follow up appointment on June 15th and schedule a yearly MRI for July to see if the current medication Ocrevus is doing its job. Until then I am taking my summer off from dance, work on getting my courage to show my face at the studio once again and just enjoying time with my family. I will keep you posted...

I chose to NOT GIVE UP!

I AM ME!

I will continue to GROW!

I am STRONG!

I can LIVE my DREAMS!

#RENITASTRONG

I am the INEVITABLE MS DEFYER

WATCH ME!!!