Intensive care, for the first time! A tracheostomy, a supra pubic catheter and infections that’s what brings me to ICU. I have ALS, Amyotrophic lateral sclerosis. At this stage of the disease I’m quadriplegic, but of a different kind. I have a dysfunctional motor cortex, all other cortices are firing fine, all other sense are normal and intact! I’m confined to my Quantum I – level motorized wheelchair. I have been for many months now. During admission the usual patient wrist band is secured neatly to my wrist. The next band makes laugh out loud, at this stage I can still laugh as I don’t have the tracheostomy yet. It’s luminous yellow with big bold black text “FALL RISK.” I wonder if it’s to protect me or the hospital! I’m sure the later. Anyhow, it’s made me laugh, unless somebody drops me, I’m not going to fall anywhere on my own accord. It’s a band they should give you when they diagnose you with ALS. In my case, I didn’t realize how frequently I would fall or how suddenly it would start! At first you stumble, your muscles don’t fire fast enough after sitting for an hour. The quads, hamstrings and glutes fall into a relaxed state, supporting the body in a seated upright posture. You stand, start to walk, and before you realize you’ve stumbled ten feet before your motor cortex decides to fire the correct message to the muscles groups that allow you to walk! It’s as though your brain was lost in conversation, and your body way ahead of the conversation decided to leave. By the time motor cortex catches up, you’ve stumbled ten feet across the office looking like your laces were tied together, before your neurons fire the correct messages to muscles – walk! By that time, you are already the office clown! Of course, no one yet knows you have ALS. And so, the stumbles lead to falls. A falling six-foot one frame is rather comical for others watching. For the person falling, time slows down, you travel through space affected only by gravity, nothing you can do can pause time, or avoid the inevitable – pain and embarrassment. A Lazy foot catches the edge of a raised paving stone on the sidewalk along the Kings Road, prostrate, for what feels like forever gravity draws you ever closer to the ground. Thankfully it’s past seven in the evening and last-minute stragglers are making their way home, not to embarrassing! The body, still able to twist avoids the face slamming into the concrete. Another time, a box conveniently in the path of travel, catches the lazy foot, gravity takes hold, face plant squarely on the office floor. Walking stick in one direction body and glasses in another! By the time you’ve realized that you’ve hit the floor, the body is no longer able to twist, you have ten people around you trying desperately to get you upright. Falls really hurt, no control over the coordination of muscle groups means falling is inevitable. Falling backwards is the worst, no sense of when or where you land, you fall like a steel beam, rigid! Missing a coffee table, the sharp shaft of a rowing machine, all very near misses to fatality! When you think about life, we fall regularly. It’s how we learn lessons in life and often, it’s painful! When we are born, we first start with millions of movements, the motor cortex holding onto those that might be useful. A hand to the face, memorized for eating or wiping away tears, the rest of the cute baby frenzied movements forgotten, no longer required. Then we start to sit up, inevitably, we fall. Start to crawl we fall. To walk, we fall, to run we fall. To ride a bike or a horse, we fall, get back up no matter how much it hurts and start again. And so, the story continues! We should be born with this tattooed to our wrist, “FALL RISK.” It will serve as a reminder that it’s okay to fall, and that we hardly ever fall alone. There is always someone to pick us up, at work a colleague or mentor, in life a friend or an attentive parent and that’s how we learn the lesson.
There is a Zen koan, a riddle usually given to monks to consider during meditation to try to find enlightenment. “Layman Pang was once selling bamboo baskets. Coming down off a bridge, he stumbled and fell. When his daughter, Lingzhao, saw this she ran to her father’s side and threw herself down. What are you doing? Cried the Layman. I saw daddy fall to the ground, so I’m helping, replied Lingzhoa. Luckily no one was watching, remarked Layman.” I love the father’s response! There are so many ways to help those who fall! Joining them in their mishap is a good start, but perhaps not by falling in the same manner! Are they just like Layman’s daughter sympathizing with the fall but not helping at all? It’s the most difficult thing to reach down and help someone up from the fall! It’s human nature to laugh or say you’ve really screwed up and your going to be in trouble now, or you’re fired, instead of making plans to correct the failure, learn from the lesson, commit it to memory and move on again. After all, is this not what attentive parents, good friends and mentors do for us in life, yet we are so easy to forget this as we go through life! Having, “FALL RISK” tattooed to our wrist at birth will remind us of how frequently we fall in life! It hurts like hell, but we learn our lessons and get up again. “We fall down seven times, stand up eight.”
Even with ALS we can’t lay on the floor looking for pity. We dust ourselves off, take care of the wounds and find a way forward! In work, in love and in life, we learn the lesson the same way, we fall! It’s the only way we learn how to grow and move forward.
#challengeALSDXB
Judithiris
Peter, “impossible you might say” but l am lost for words at yet another blog that speaks volumes. At least this one didn’t make me cry, hahaha. One day l am going to print them all off and make a fortune (just joking)
Much love to you Antoinette and Tallulah xx
Jackie
Dearest Peter , thank you for reminding us that we need to be there to catch one another or lift each other up when we fall . We all fall and we all need each other. Much love to you
Seth
Inspiring and well-written, Peter. It makes me realize that we instinctively associate falling with failing, whereas it’s an inevitable part of learning to do anything, and learning is the opposite of failing. It can definitely be painful if you land wrong, but it should never be embarrassing.
Sancho
The character of a man sometimes can be defined in the manner by which how they stood up after each fall. It has been said that what doesn’t kill you makes you stronger. As such each lesson from a fall gives you strength innate only to your own. Whether it manifest physically, emotionally, mentally, or spiritually, no one can know except for the person who have experienced the fall. What life gave you is something different. An altered fall you might say. Slowly, gradually, very limiting. I admire your great fortitude to face it head on. In some way it inspires other to reach out and not let you fall all the way. You’re still surrounded by people who won’t let that happen. Be strong Peter. Live strong.
Sally
Thank you Pieter for another beautiful blog. 😘
You are my inspiration, my hero and my son , I salute.
The day you were born I fell in love with you. A fall I will never forget 😘
Your blog reminded me of something someone said to me many years ago.
“Sometimes it takes a good fall to really know where you stand”
I love you to the moon and beyond now and always 😘😘❤️❤️❤️
Susan Matthews
Hello Peter, 9 letters 3 words? Yes its your MA (mad Aunty) again so prepare yourself. My first fall I think happened when I was a baby and Nanny dropped me on my head and I have never been the same since haha. Now for some sensible conversation. I did have a fall when I was eventually released from hospital after the wall fell on my foot. This of course happened before your time (I dont think you were even thought of then, but I suppose practising makes perfect because it wasnt long and you were born, (now I am singing this bit “your mother’s going to kill me” now I am peeing myself laughing). This happened in 69 Fourth Avenue. I know there is nothing wrong with your imagination so use it now…..on crutches going down the passage, I put the crutches on to the rug and of course the rug slipped, the crutches went flying and the only thing that caught me was the floor….ouch!. BUT I can remember that Peter Gal was there and someone else and they thought this was a joke (here comes another but) BUT Grampy came to see what was happening and he gave them such a bollocking I was the one laying on the floor laughing. That was the first and definiately not the last fall I had. Here’s another one for you imagination …… in a shop in Treherbert (just down the road) I was coming out and I missed the last step, well this one is very embarassing, the pavement said hello to my knees, my head fell into the lap of a man who was on his motability scooter and my one are was wrapped around the handle OMG people were fussing around me and I got up and was more worried about the man on his motability scooter then the blood pouring down my let from my battered knees hahaha. I have had quite a few recently because in my old age my balance has gone downhill but I dont get emmbarrassed anymore.
Peter as I have said in my previous messages, you keep fighting so that you piss you know who off.
I have thought up something new to end my message to you ……. 8 Letters 3 Words to infinity your MA.
PS. I meant to say that your blog was amazing. No long words hahahah
PPS. My love and admiration to Antoinette and Tallulah love them to bits.
PPPS. I know I have spelt embarrassed wrong but that was on purpose. I just wanted to make it look like I was using BIG words.
PPPPS. Cant wait for the next blog.
Derek Horn
Peter
You are truly amazing and totally inspirational but I always knew that since
working with You and Seff.
Have been in touch with Roland who has gone thru terrible times including 5 weeks in forced coma. Sure your blogs will get him thru it.
Cannot explain how reading these blogs reveals your depth of character and hope. You are truly blessed and I feel privileged to have worked and laugh with you in the past. Keep inspiring my dear friend.