If you read part one of “When All Else Fails, Face Plant in Ice” you are likely wonder a few things. You likely want to know:
- Why on earth does Susan put herself in these situations?
- What happened next?
- What about the face plant part?
- And how is Susan today?
Why on earth does Susan put herself in these situations?
The first ten years post-diagnosis I lived awaiting to die. I prepared for the worst case scenario with everything I did forming a protective bubble around me. I worked from home choosing a profession that would allow me to continue should I go blind. I rarely went out or socialized, not wanting to get to close to others. I followed my doctor’s instructions: I didn’t exercise or change my diet, I stayed out of the heat and I rested. I did absolutely nothing to better circumstance.
Call me a slow learner, about a decade into the disease I had a thought. I thought, “Susan, this is no way to live. You are 40 years old and have no quality of life. As each day passes your MS is getting worse.” And at that moment in time I chose to bust out of my protective bubble and live.
What happened next?
Part I of “When All Else Fails, Face Plant in Ice” had me 2 hours into the Queen Lili’uokalani canoe race in Kona, Hawaii. The sun was had been betting down on me full-force and it was about 38C and humid. I had a full on MS attack, asked my crew to stop the boat so I could jump in to cool down and inevitably be rescued. Rita was clenching my shirt straps making sure I didn’t slip away from the boat, the Seattle crew’s escort boat had radioed for medical and I was awaiting rescue.
I don’t know how long it took for the Sea-Doo to arrive but to me it seemed like an eternity, and all I could say was “make sure they put me on ice”. I kept repeating “I need ice”. When it arrived I floated over to the rescue sled and crawled my way up the sled, clenching the handles at the top. The Seattle crew had prepared a bag of ice which I placed on my hands attempting to cool to re-gain control so I hold onto the sled.
The young man driving the sea-doo was very kind. He checked with me throughout the ride to ensure I was ok. He assured me he would go slowly so I would not fall off and prepared me mentally for my transfer to the medical boat. He would not be able to help. I spent our travel time thinking about how I would transfer from the sled to the boat, gathering up the strength to move.
I continued to apply ice to my hands, switching from left to right; right to left. I focused on holding onto the boat and then I let my young rescuer know that I had MS and needed to be put on ice as quickly as possible. He radioed the message ahead. I repeated my request for ice as many times as I could.
When we arrived at the medical boat I used what-ever strength I had left to crawl onto the back seat of the sea-doo. I was then pulled onboard by a group of gentleman. I continued to repeat “I needed to be put on ice – I have MS.”
What about the face plant part?
The medical team had me sit on a large box so they could assess my condition. Before they could do that asked that they put me on ice right away. They quickly scrambled to find it only to realize I they had me sitting on the very large cooler of ice. I stood up, they opened it, and I quickly dove in head first.
I nestled into my bed of ice, with my arms and chest submerged, my head resting on top, and my bottom and legs hanging over the cooler. Henry, one of the medics, checked in to see if I was ok. I assured him I just needed to “sit on ice” for a while to get more core temperature down. I could not move. He placed a cold wet towel on my back. I stayed in my bed of ice for 10 to 15 minutes.
As some point I slowly shifted my body onto the deck of the boat lying face down. Henry and another medic (a lovely woman) provided me with bags of ice for my arms and placed ice on top of the towel on my back. My body felt so thick and heavy. I could not move. I did not want to move. All I could think about was ice, I need more ice.
Henry took my vitals which were fine. My heart rate was 96 bpm and my oxygen uptake was 97% confirming that this was truly a neurological issue. He continued to check on me as he was able and chatted with me for brief points to make sure my cognition was ok. He was a very kind man.
I lay on the deck for what I think was about 30 minutes until I was able to get up. I knelt on all fours and then slowly stood-up and made my way to a bench. Henry encouraged me to go inside the boat’s cabin where it was cool – and he was right! If you had beer, this is where you wanted to store it.
I lay on a bed in the cabin for about half an hour, chatting with the medical team. The boat stopped, and I realized we were in Honaunau, the end point for the race. I would soon be escorted to the land.
I walked out on deck to find out how I was to get to shore. I wanted to give my body (and mind) plenty of time to prepare. And then it happened! My crew crossed the finish line. It was overjoyed they finished – to achieve this with only 5 in the boat is incredible. I was extremely proud, but at the same time heartbroken seeing an empty seat; mine.
The medical boat would not be able to land on shore. There was over 100 boats in the bay and over 1,200 people. We were about 1,000 meters from shore; my rescuers would be escorting me in on Sea-doo as far as they could and I would have to swim the rest. I prepared myself for the journey and boarded the Sea-doo.
I felt weak, but convinced myself I could do it – I could swim to shore. And there were a lot of people around who could help should I run into trouble. I jumped off the Sea-doo I slowly swam toward shore. I had very little control over my movements but I was close enough that I could find the bottom quickly if I needed to. There were lava rocks hugging the landing spot making it difficult to exit the water. As I struggled, a man reached out and grabbed my hand to help me.
I stood on shore; not really knowing what would happened next when she appeared out of nowhere. It was Shawn Stalker, my nurse from my swim across Juan de Fuca Strait. Shawn knows me well and she knows MS well. I could not have asked for a better person at that moment in time. She knew exactly what to do and made sure I was safely escorted back to the plantation where we were staying.
How is Susan Today?
The recovery from Queen Lili’uokalani has been a difficult one, both mentally and physically.
More to come ….
Good sharing Susan…..such a part of living with MS…..the vulnerability when our body stops and yet our mind says ” yes ” to activities …..