On arrival
After my shower, Suzanne, the care support worker, led me to the nurses’ office. “Right” she said. “That’s me finished with you today.” She took hold of a chair and put it down on the floor in front of the desk. “Sit down and be quiet until your nurse arrives.” The door slammed shut behind her as she walked out of the office.
Meeting the nurse
10 minutes later, the door swung open. “Oh, good morning, you must be Mark” she said. “Yes – are you my nurse?” I replied. She hung her coat on the hook on the door. “Mmmmm, yes, I am” she smiled. She sat down behind the desk opposite me and took my notes from the drawer. She studied them for a good twenty minutes whilst I sat quietly and twitched nervously. Only the noise of her turning the pages broke the silence.
She put the notes away and finally said “Mark – do you know why and how long you are here for?” “Yes I replied.”Well?” She said. “I’m having trouble with my jacket.” “Your jacket?” she cut me off. “I think you mean your brace don’t you? Your Milwaukee Brace.” I winced as she said the words. I couldn’t stand the label. “And how long are you staying with us?” “Six weeks” I replied. There was a long pause whilst she studied me. “You are here because your parents are having difficulty in ensuring you comply with your new treatment and your back is getting worse. My job is to ensure you do comply and I will tell you now so that you are not disappointed later. I am not a pushover like your parents. I am the boss round here and what I say goes, do I make myself understood?” “Yes” I replied nervously. “If I feel you need more time to get used to your new treatment I shall inform your parents how much longer you need to stay and even when you eventually go home, I shall be working with them and closely monitoring your progress. You will be spending most of your time here in your own room in my care. You will address me as Nurse Winslet. I’ve had a good look at your Milwaukee and I’ve sent it to the workshop to have some wrist straps added so that you can’t get out of it like you were doing before.” She looked at her watch and said “It should be ready in another hour so I’ll take you to your new room.” She stood up and opened the door. “If you would like to follow me please.”
The room
As the door slammed shut. I became startled when I heard it being locked from the other side. It was tiny, just a few feet long and very narrow. The walls were painted in a horrible mustard colour and there was a small dirty window high up above reach, with rusting wire mesh on the outside. A narrow bed and a small chair completely filled the room with no more space in which to put anything else. There was the stench of strong bleach and the room was hot with no ventilation. I tried looking for a valve with which to shut off the aging cast iron radiator but like the lights, they must have been controlled from the outside.
Oh my god!!! They are attached to the rear bars!!!
It seemed much less than an hour. My final moments of having the ability to do what most people take for granted – being free to move my neck, look down at my feet and bend my body. There was nothing to do in my room except to sit on the bed and stare at the wall. I had tried opening the door with the intention of asking someone for a TV or books but the sound of the door being locked earlier was confirmed. My trance was broken by the sound of clicking heels becoming louder. The door rattled and flung open. Nurse Winslet walked in carrying my brace. My heart pounded. I’d seen and worn it before, but still, the sight of it shocked me. And the wrist straps – Oh my god!!! They are attached to the rear bars!!!
The door slammed shut behind Nurse Winslet. To her, the brace seemed nothing unusual. She handled it as though it was an everyday object, nothing she was disturbed by or wanted to hide. To me it was still alien, shocking and I was ashamed of it to the point that I could hardly bear to look at it or touch it. “Right.” She said. “Shirt off please.” I obliged. “Arms through here please.” As she opened up the back and slid the brace under my chin and around my body. As she eased on the brace I could feel immediately that there was something else different about it even though it was just hanging slack on my body. She took hold of my arms and spun me around to face the bed. “Okay, I want you to climb onto the bed and lay face down.” It was awkward but her manhandling ensured I succeeded. A moment later I felt the metal collar closing around my neck to the extent it started choking me. It was snapped shut followed by the sound of the thumbnut being tightened. My hair became entangled around it and I let out an ouch as I could feel the roots being pulled out. “It’s just a little bit of hair” nurse Winslet said. “Stop the amateur dramatics now.” Her hands then moved down to the girdle and I could hear the threading of leather straps through buckles. “Okay darling, I want you breathe out – breathe in – hold your tummy in.” I obliged but it wasn’t enough. “Hold your tummy in – come on now – squeeze harder.” Her voice became harsh “I said. harder.” As I squeezed it in with all my strength, the whole brace moved up my body, taking my neck with it and the girdle began it’s powerful, grip around my waist. The brace vibrated as the three leather straps were pulled tightly through the buckles and secured. There was a pause. I tried to push the brace back down my body by pressing my chin against the upwards thrust of the throttling neck collar but it wouldn’t budge. The girdle was firmly wedged into my waist against my pelvis, preventing it from sliding back down. Nurse Winslet had lengthened the upright bars and had tightened the neck collar and was making me wear the brace much higher and tighter than I had worn it previously. She pushed and prodded my body before saying “Ohhh yeah, that’s a beautiful fit.” I tried wriggling my body but it was held rigid and I knew she wasn’t her holding the brace anymore when she took hold of my left arm. “This is ridiculous” I said. “I know I’ve got to wear it but this is too tight and it ‘s too high.” Nurse Winslet bent my arm behind my back so that it lay across the two rear upright bars. She quickly tightened the wrist straps before taking hold of my right arm. “Okay darling, you’ve had your little protest now, get your wrist in here” as she bent my other arm behind by back a little more roughly this time, presumably to make a point. She tightened the wrist straps so that I was in a type of “strait-jacket” configuration. The muscle cramp was very painful. “Darling, I’m going have to secure you to the bed for your own safely so you don’t roll off onto to floor and then we are all done.” I just laid there in tears whilst I felt and listened to my ankles and elbows being strapped to the sides of the bed. “I’m suffocating” I said. My face was flat down on the surface of the bed. “Okay” said Nurse Winslet, just wait a tick and I will get you a pillow. I heard her leave the room and re enter a few moments later. She slid the pillow under the upper part of my chest region and the front upright bar so that my head was lifted off the mattress. “There, that’s better” she said but now my head had no support so my throat slid even further onto the chin pad and blocked my breathing completely. The only way I could keep breathing and able to speak was to hold my neck up but it was becoming tiring very fast. “Nurse, the chin pad is throttling me, can’t I lay on my back instead” I said. I heard a long sigh. “Darling, you can’t, your arms would be squashed between your brace and the mattress.” “Well can’t I lay on my side then?” “Darling, no matter which position I put you in; you are going to be complaining of discomfort aren’t you? I’m not your parents, I’m your nurse and you won’t wrap me round your little finger. No matter how much you dislike your new brace you are going to have to grin and wear it I’m afraid. There are a lot of patients here who have much worse conditions than you and who would rather be in your shoes. Did you know the patent next door has to spend his life in a cylinder called an iron lung for 22 hours a day because of his Polio? Even though you are in the Milwaukee brace 23 hours a day, at least you will be able to walk around in it and resume normal activity soon. You should count your blessings you are not in his position.”
The final humiliation.
“Oh blast” said Nurse Winslet. “I forgot to mention that I’m going to have to insert a catheter into you being as you are going to spend your initial period adjusting to your new brace on the bed in this position and we can’t get you to the toilet.” “How long is that going to be” I said in horror, previously expecting it to be a couple of hours at most. “A week” she replied. “But if you persist in bothering me with your trivial complaints I can extend that period for you. Would you want that?” I broke down & cried. “I asked you a question.” “No” I replied. “No you don’t, do you” she said. I didn’t know what a catheter was except that it was something to do with urine and had a bag but by this time I was too afraid to ask for fear of aggravating her further. I found the procedure painful with the tube being felt as it was slowly inserted all the way in. The bag she taped to the inside of my right leg was the final humiliation. I can only imagine how I must have looked.
All done!
“All done now” said Nurse Winslet. Now the side effects of wearing the Milwaukee brace were really starting to kick in. The brace was hot and I was dripping with sweat. The girdle was biting into my waist and rubbing my hips sore. The leather chin pad was rubbing by soft skin red raw and still had the added delight of choking me if I did not keep my aching neck back. My neck and spine was aching from the tension. My arms felt as though they would break at any second, being bent at right angles, high up behind my back. Nurse Winslet squatted down at the head of my bed so I could see her. She looked at her wristwatch and said “Okay darling, time starts now and remember, I can increase that time. Throughout the next week I shall be continuously lengthening your brace as you slowly get used to it. As your organs compress under the pelvic girdle it will fell slacker so I will thus, tighten this up too.” She patted the plastic girdle. “Your lunch will be at 12 o’clock and to save me going through all the rigmarole of unstrapping you from the bench, getting you into the chair and having to feed you, I’m going to put a tube down your throat and feed you through that.” “No” I shouted. She thrust her wristwatch into my face. “And one week has just turned into one week and 1 day. Watch ticking!”
She stood up and her footsteps sounded to the door. “Darling, I’d like to think you will thank me one day for what I have to do to you now. But I don’t think you ever will because when you get older and you have a nice straight spine, or as straight as it can be, you won’t appreciate how disabling your Scoliosis would have been without you being made to wear your brace properly. If you had cooperated with the doctors and your parents in the first place you wouldn’t be stuck here now.” The door slammed shut and the lock rattled from the outside. The tapping of her heels faded and there was complete silence.