Waiting for a Better Tomorrow

by Chrystie Lose, aka Twysted Sam on Fri, 2013-10-11 13:53

Chrystie Lose, aka Twysted Sam

I am not going to lie. These past few months have been really hard both physically and emotionally. I hear from so many people how, to them, I seem "brave" and "inspirational" but I don't feel that in myself. I feel trapped and alone in this body and life that I once loved and depended on but no longer can.

Over the past 40-plus years, I got through tough times knowing that I could make it because tomorrow had the possibility to be better. With ALS, tomorrow is not better and there is no one — not the doctors or medicine men or faith healers or alternative care practitioners — who can offer real hope today that tomorrow will have options for improvement. I know many top researchers, scientists and doctors are working on finding treatments and a cure right now, and I appreciate them all, but even if they found the answer today, it would take at least 18 months to get it to the shelves and, ultimately, to patients. That makes for a lot of rough tomorrows ahead ...

On the other hand, there are areas of medicine where doctors can heal the sick and injured, and provide hope that tomorrow will be better. In the midst of the daily challenges of living with ALS, and because of it, I had a personal opportunity to witness this.

Last month, Dan and I went to the outdoor mall to do some shopping. After getting a great parking spot, I got out of the truck and moved toward the sidewalk. As I stepped up, my flip flop went into the curb instead of stepping up onto it, and I went down, face first. I was stunned and hurt, with blood dripping down my face and into my eye, and I remember hearing my glasses break. Dan was by my side immediately and helped me turn over and sit up. I could hear two ladies stop to help, both nurses who happened to be shopping nearby, but I never saw them. I kept my head down and just focused on breathing and staying calm.

Twysted Sam's cracked sunglasses

After a few minutes of trying to get the nurses to stop grabbing my arms to help me up (from the ALS, my arms do not have normal mobility and hurt very badly when moved in the wrong direction), Dan got me back into the truck and on our way to the ER at Mayo. Once there, where they already had all my medical records, the ER team went into action. They cleaned my face, did a CT scan of my head, and took X-rays of my right hand, which hurt a lot. The CT scan showed all clear, and my hand did not appear to be broken so they sent me home with some pain meds in my system and a prescription for more.

Two hours later, they called to invite me back because, after a closer inspection of the X-rays, they realized my hand was broken. Also, my teeth went through my lower lip so eating was awful for the first few weeks with very few options that I could even consider. Needless to say, I lost a few more pounds.

The follow-up visit with orthopedics (Dr. Montero was kind, encouraging and knowledgeable, and James made me a customized removable cast) was a great experience, all things considered. 

Basically, I am crushed because my level of independence went down further while my feelings of being a burden, both to myself and those around me, went up. Worst of all, my legs feel weak and unsteady most of the time now, which prompted the ordering of a wheelchair.

The upside? My face and hand have healed quickly, which means that my body is still healthy and in good working order ... If only I didn't have ALS, tomorrow could be better! If only ...

Originally posted by Twysted Sam Oct. 10, 2013.

About the Author

In 2012, I started the year as a 42-year-old woman with seriously curly hair, blue eyes and a growing medical concern. My speech had deteriorated to a point that made me very hard to understand. One day, while getting lunch at my favorite taco stand, I gave the name Sam for my order. Sam was easy for me to say and, hopefully, nobody would ask me how to spell it. (People are always asking how to spell my given name, which I can no longer say clearly.) So now I am Sam to the new people I meet.

Then, in April 2012, I was diagnosed with ALS. With that devastating news, Twysted Sam was born and I started this blog where I can vent, share and just be me. For all of you who are interested in my ramblings, I hope you get something out of this too, even if it’s just a good laugh or cry or whatever. So, the journey begins ...

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