I am on my second round of Botox injections!
When I stand in front of a mirror, I look okay. Nothing special. Nothing horrendous. It is when I move that despair engulfs me. I look at my hand, pulled up cobra-like into it’s awkward posture and my leg with it’s awful limp and feel an intense aversion. How I abhor this spasticity. And yet there is nothing I can do to hide it. Or so I thought.
Then a neurologist entered my life!
I was having a serious problem with my knee over-extending due to my spasticity. My physiotherapist had been giving me great exercises to strengthen my leg. But, I still couldn’t seem to stop my knee from misbehaving. Finally he suggested that I visit a neurologist. I needed to check that the daily pills I take to minimise my spasticity, were still doing their job. I had been taking them for thirteen years. Who knows what medical advances had been made?
My neurologist is a lovely person with a smile that lights up her room. She listened to my story and remarked: “No, you must stay on Bio-Baclofen. Without it, people in your situation find their legs suddenly breaking into trembles whilst lying in bed.”
“Yes,” I cried, “that’s exactly what happened to me when I thought I could do without them.”
“Let me see you walk.”
I did so without trying to control my spasticity in any way. My knee ‘backfired’ in it’s usual manner. I normally hang onto my shoulder bag with my right hand and in this way disguise it’s spasticity. Now I had no bag to clasp. As a result my arm was raised cobra-like at the elbow with my hand turned inwards and the fingers splayed in their normal spastic mould. I reached the end of the room and turned back to her sheepishly.
“Sorry,” I muttered.
That was the thing. There was no need to apologise. Due to my fall off stage, I was spastic. And yet, I was ashamed of it.
“I think that I can help you,” my neurologist said. “You have heard of Botox, haven’t you?”
Botox? What was she talking about? My leg and arm needed help, not my face! She saw my reaction and continued.
“Botox is short for botulinum toxin type A. The effects of Botox have been known since the early 1900s, but the toxin has only just been discovered to help patients with spasticity.”
“Help us? What do you mean?”
“Botox is a nerve impulse ‘‘blocker,” my neurologist explained. “It attaches to nerve endings and prevents the release of chemical transmitters, which activate muscles. These carry the ‘message’ from the brain that tells a muscle to contract. If the message is blocked, the muscle doesn’t spasm.”
“It doesn’t…well…spasticise!” She smiled, nodding her head. “How long does this miracle last?”
“About three months. Then if you are happy with the process, we can do it again.”
This whole thing was magical music to my ears.
I went home this delirious wreck! No more spasticity. I would be normal once more, wouldn’t I?
“Imagine, Mums, no more spasticity. Will I be able to do things I used to?”
“We’ll have to wait and see,” said Mums cautiously.
“Maybe I’ll be able to play the guitar again!” I said, all caution happily thrown to the winds. “I won’t be able to sing but I see no reason why I won’t be able to strum and pluck as I used to. Do you think I’ll be able to play tennis once more? Maybe I’ll be able to serve, do backhand and forehand,” I babbled on. “With my knee working properly, I’ll probably be able to run once again!”
Mums put her arms around this literally hyperventilating daughter.
“Sshhhh, Gaye, sshhhhh! We don’t know what will happen. Don’t build your hopes sky high. It makes the fall all the more painful.”
My neurologist decided to inject my knee, my two first fingers and thumb, my wrist and lower arm. I hate injections but with these the needle slipped in and out smoothly. I was told that in about two weeks I would begin to see the effects.
Okay, I’m going to keep an open mind and see what this mystical Botox transforms, I thought. But…please oh, Lord, I prayed, let this transformation be magnificent!!!
About two and a half weeks later I was making myself my six o’clock cup of coffee and gave a yawn as I reached across for the coffee pot with my right hand. I attempted to pick it up a and gave a horrified cry. My hand would not move at all and the arm had no strength in it whatsoever. Glory be, my neurologist had not mentioned this happening. Perhaps it was just the start of the whole process. The spasticity would die out as she had said it would and the function in my hand would return. Unfortunately this didn’t happen. Instead things degenerated drastically. I felt as if I had this lump of useless flesh attached to my elbow. I didn’t seem to have much control over my knee either. My physiotherapist had taught me the best way to walk in order to reduce my over extension and also back pain. Now I didn’t seem to be overextending as much. That was the whole purpose of this exercise, wasn’t it? But I didn’t like my loss of control, my walking style seemed to have gone to pot!
I beat a hasty retreat back to my neurologist rooms!
“I didn’t realise how sensitive you are,” she commented. “This is the thing about Botox. The dosage in each person differs. With you, I have obviously used too much. There is nothing I can do about that. Just know that you will improve as time moves on and it begins to wear off.”
My dreams of playing the guitar and tennis were blown back to where they had originated – the world of dreams.
I was left worse off than I had originally been. I was unable to use my spastic side at all and because of this, it was made all the more evident. I was self conscious about my spasticity as it was. You cannot imagine how I felt about that imbecillically useless appendage that hung on my right hand side.
Fast forward eight weeks and a different Gaynor emerged. This Gaynor had a right hand that worked once more. And gone were the ‘cobra’ days of it constantly rearing up for all to see. I was walking in the Botanical Gardens and my friend, Jans, commented: “Gaynor, your arm is moving really well.”
And so despite my original reservations, I decided to continue the treatment!
The second time I was injected with Botox, my neurologist used far less. She only injected my wrist and lower arm in several places. She left my fingers and thumb.
“You need those to grip your coffee pot,” she laughed.
Because of my spasticity, I have a big toe that often refuses to lie flat. Like my hand it often rears cobra-like into the air. I told my neurologist about this and the Botox needle went to work. As the needle went into my toe, I thought: Die, Cobra, die!!!
And indeed it has. My pilates teacher remarked on the fact that my toe was now down.
Nowadays I don’t need to walk clutching my bag or with my hand in my pocket. I am able to walk with both hands swinging at my side. Yes, I know that it is not what is on the outside that counts. It is one’s spirit that is important. I know all of that! Yet to be aware that the first impression I give is not one of spastic disablement but one of limping normality is marvellous!
So, no, I do not play the guitar, as I had hoped. I do not race around a tennis court, serving, doing backhands and forehands. I do something which to me is infinitely better.
I simply walk with my arms swinging easily at my sides!