NOTHING IS BEYOND OUR MIND
Room no: 2323
I was shifted to room no.2323 with the bed, as I passed the nursing station, I saw them overwhelmed and their eyes glowed in curiosity. Entered the room and I helped myself out of the bed and headed to lavatory, when I stepped out a new nurse was already appointed for me. As I was trying to reach the bed, she saw my bare back which was eroded completely, she reached out to me and asked for my permission to click a picture of my skin. I positioned myself under a bright light for a clear view.
[ I never felt the curiosity in them as a fault, placing me in their position I would’ve been more than excited to know about the new case. I appreciated her approach and interest in knowing about it.]
The same night I slept like a baby. It’s been months since I had such a good sleep. Morning around 6 am they woke me up for bath, I didn’t like it, I didn’t want to shower, I didn’t want to do the dressing that early. I was shivering already and the saline was too cold for my skin, room heater was brought to turn the room warmer . They convinced my mother that they needed to bath me before they change for the next shift. I cried and begged not to force me, but they dragged me out. During this period of time I stopped using toothbrush and paste instead switched to mouth wash, ‘cause the gums were bleeding and tongue had huge painful lesions.
As they started to pour the saline I started to scream that the other nurses rushed to my room. I made their work twice harder and was so stubborn to be cooperative.
[ I couldn’t blame anyone, it was their duty and foremost care to an extreme infectious patient who has been brought to their ward as final hope.]
By the end of the time the room was filled with moist air, smell of bactigraz sheets lying around. I wanted to sleep, lay on my back and breath, but I wasn’t allowed to be on bed. My mother forced me to have my breakfast [oats, fruits, eggs, milk and cornflakes]
I drank the milk and forced myself a couple of fruits.
My mother was drained out, she no longer had the energy to talk or convince, when all she heard was me crying and complaining about how brutal it is stand in the cold. Suddenly I was unable to breath, concentrate on constructing words, heart rate spiked, the shivering worsened, tears rolling down the eyes and I wasn’t able to control myself. Nurses came inside the room and raised the bed for me to lay on them, within few minutes I got back to normal. The psychologist came to check on me and she suggested a heavy dose to prevent another episode of anxiety attack.
All that I recollect from that day was when my mother asked to the doctor, “ what if she gets used to it? What if her body stays in control only under these doses? What if she starts to get relayed on them?”
I was able to sense her fear underneath, but it made me feel ashamed of myself, every “what if!” started to haunt me.
She repeated saying to me, “nothing is beyond our mind, nothing is beyond our control and nothing goes away without you moving forward”.
As much as it was hurting to listen, it made me realise the truth, I initiated the fear in me standing under the cold shower and I was reluctant to walk or stand fearing about pain I need to endure while sitting or laying.
September 4 2023, they started to see progress in skin, Madhu ma’am captured the progress everyday and I was happy to see the changes that it carried from September 2nd to 4th and from September 4th to 7th gave me confidence that it was going to get even better. Doctors suggested physiotherapy sessions in room to keep my muscles in function and for the new skin to get used to the movements.
[ It is funny today to think about the first two days of my physiotherapy sessions were I was in full of anger and root cause of it was, I felt shy!]
The physiotherapist was kind to me, I never showed interest having them in the room, when she suggested for five rounds of walk in the corridor, my face turned red, wearing two gowns one at the front and another one at back and her holding the back gown as I walked swiftly.
[ Yes, I wore two gowns back and front because there were erosions and the skin just began to heal; from the lumbar to gluteal regions were skinless with no signs of new skin growth. It was the last part to heal and till today the recurrence of lesions are mostly seen in those regions.]
Back then the main reason for the delay of skin growth was because of my prolonged time of sitting on the couch or bed, every other parts in my body healed faster than expected.
As much as I tried to avoid her, she stood with me, motivating me at every step. We made a good team after an incident that took place;
on the second day of my session the physiotherapist saw me in horror, I stepped inside the bathroom to get myself ready for the walk were the mirror was left open, I saw the reflection of myself and was torn apart seeing my whole skin eroded leaving hyperpigmentations and face eyes covered with crusting, looking down at the neck bleeding and healing at the same time. I felt pity looking at myself, I felt bad for the body insecurity that I carried all these years. For once I wanted to see the skin, body which I had a year back.
I wanted to witness the kid (old me) and scream at her, “ you’re beautiful just the way you are!”.
I started to cry holding my mom’s hand asking her “What am I mom? Why are you still staying with me? Ask them to remove the mirror, I beg you!”.
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| Degree of acceptance |
The physiotherapist stepped in and she saw my bare body for the first time and the room carried that smell that no one could stand. She stood there for a moment trying to calm me, and suddenly left the room.
The next minute I heard people footsteps approaching and mummers “are you okay? Do you want some water?” .
[Yes, she rushed out the room because she felt suffocated and fainted in the hall way.]
I felt bad for her and angry on me. Once she got back to conscious she entered the room with bright smile as if nothing happened, I saw her passion, I saw her will, not even once she mentioned or gestured about how tiring I made her feel. I apologised to her for being rude and followed all the movements that she taught me, she suggested to take a walk frequently as much as possible with small intervals between resting and standing. Within couple of days my mom turned to a strict instructor and dragged me out to walk.
And the wound healed better and faster, that I no longer needed a physiotherapist.
From going through the torment of saline wash twice a day to once a day because I was able to identify the trigger for my anxiety attacks, ( till date I never took the dose that was given for the another episode, I always remembered “nothing is beyond your mind”). I accept I had bad days when they added silverX cream for the wound dressing and it burned my skin and was a nightmare. But they helped with fast healing and by September 11 I saw new layer of skin covering the whole back.
[ SilvereX gel = helps in preventing and treatment of infections in patients with burns.
**This can give a picture to visualise what a pemphigus vulgaris patients wounds looks like and ways to heal with it.
Another example to visualise; imagine a wound that we get through steam, it is believed that wound from steam is far painful and degree of burn differs from that of the fire. So these pemphigus patients are prone to such erosions and wounds without any external stimulus, some days a mild friction of cloth or waking up from the bed could cause such erosions.**]
Days were flying, shift after shift nurses changed and they encouraged to pick up my hobbies. There were bad days when I begged to Madhu ma’am to discharge me and let me go home, to visit my new born niece, to see my own sister to whom I never got to chance say “I’m proud of you or you’re holding up well”. I felt enraged from the thought that our family wasn’t able to celebrate a new life, instead they were stuck with me. Many days during the hospitalisation I cried my heart out to my sister asking sorry, it was all because of me. My sister was dear to me and at every tough situation she made sure I’m never to be blamed and this too shall pass and constantly reminded me that, soon I’ll be able to hold her baby.
Madhu ma’am helped me to change my anger and guilt to a force , a meaning for my recovery.
I got a paper and pencil and started to draw, my hands were shivering wasn’t able to hold the pencil, I tried to rest my hands to give a good hold to it only to find my fingers with new blisters and skin erosion in the hands as I gave pressure to hold it still. It took me two days to draw a simple leaf, my patience was in thin ice, to see me struggle to draw or to write an alphabet straight. But I was stubborn to get them straight, I started to admire the imperfection in those leaves, and shaky letters. They kept my mind off from pain, I felt new, I felt more stronger day by day. I slowly tried to complete a drawing within a day, they were simple trees, boats glasses etc, but they meant a lot. I felt happy for every improvement.
[Today I am able to draw better, there are blisters showing up now and then but I found peace within myself, there’s no rush!]
I believe a dream helped me to heal faster, **one night I had a dream wearing a green dress with my hair tied up, holding my files getting into an elevator walking in for the review, and I remembered my skin felt normal.**
I shared this dream when dr. Murlidhar came for rounds, his face glowed to hear me say those words and he added by saying, “Yes! You’ll be back to normal. Yes! You’ll wear normal clothes, yes! You will walk through those door on your own.”
[ How much the words values in a persons recovery! Some thinks grand gestures does , materials does and here I’m ready to advocate “words does”. Life is too simple to make it complicated. ]
I was discharged from the hospital by the end of September wearing my blue dress, walking on my own, infections were settled, yes my skin was still tender, had open wounds, bleeding from the nose turned to crust but they were better.
And YES! Till date I walk through door by my own, wearing my own clothes, Yes! Even if I have terrible days .
[comment your view on title and what would you say to your younger version]
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