Room 23

by Kavita Basi

• Return to work, minimum six to twelve months

  • No alcohol for at least six months

  • Stay home for at least four weeks

  • Phone can be used or TV can be watched when ready

  I was happy and excited all the way to the car, and even after I sat down in the car, but as soon as Deepak began driving, I started to feel dizzy and not in control—my head was spinning. It felt like I was riding in a car for the first time; I had to close my eyes.

  I had to be able to make it home; I was determined. But something was off about my coordination. I wasn’t able to adapt to the balance and motion of being in the car.

  Deepak could see I was struggling and slowed down, which helped a bit.

  We decided to stop and visit the local Hindu temple before going home. I felt blessed to have been given a new chance at life, and I wanted to show my gratitude. We walked slowly into the temple and met with the priest.

  “May I have your blessing?” I asked.

  I stood in front of the holy statues and prayed.

  Thank you for keeping me alive.

  Please keep me happy always.

  I will embrace life and enjoy every moment without complaint.

  The priest put a red bhindi on my forehead and tied a holy thread on my left wrist to bless me. We left with prasad—blessed food—from the shrine.

  “Are you hungry? Do you want to get McDonald’s?” Deepak asked as we got back into the car.

  I hadn’t eaten fast food for ages, but in that moment I wanted to have the experience of fries and a veggie burger with my husband. I had been pining for this day for so long. I had already missed so much; I didn’t want any regrets. I wanted to do as much as possible before I got tired. I could sense my life was going to be one big adventure from here on out.

  We took our food to the park to eat and it felt so amazing— probably the best meal I’d ever had! But on the way home I had so much motion sickness. And it got worse when we got on the highway. I didn’t feel right. I didn’t know if it was the food or my lack of coordination or that maybe I wasn’t ready, but my stomach couldn’t handle it and I vomited all over Deepak’s sports car.

  When we pulled into our driveway, I was exhausted and ready to sleep. All the excitement had made me so tired. Even so, I had an overwhelming sense of happiness and relief.

  I’m finally home!

  When I walked through the door, I found my family waiting patiently inside. My mother-in-law had a bottle of oil ready for when I crossed the threshold of the home. She poured a small amount of oil on each side of the door to welcome me and send away bad spirits—a traditional Indian custom for when someone returns home after graduation or getting married, when a new member of the family arrives, or, in my case, when someone comes home from a seven-week stay at the hospital.

  Deepak held my arm as we slowly moved down the hallway toward the stairs. I was so tired; I’d had too much excitement for one day.

  When I reached the bottom of the stairs, I stopped. I looked at Deepak, then the steps. Why wasn’t I moving?

  I didn’t know what to do with the stairs. I had forgotten how to walk up steps.

  I felt completely helpless and awash in utter despair in that moment.

  My brain couldn’t coordinate the movement of my body; it was like it was in a double bind with itself. I knew I should know how to walk up steps and that my body could do it—I’d done it a million times before, after all—but my brain couldn’t coordinate the signal to make my body do it. Deepak had to lift me up and carry me upstairs.

  He set me down outside the bathroom. “Take a shower,” he said. “The intercom phone is here for you to call for help.”

  After seven weeks of never feeling clean, I was desperate to wash the hospital off of me. Even though I was exhausted and washing my long, thick hair would be a monumental task, I was determined. I sat in my dressing room and looked at myself as I waited for the water to warm up in the shower. My hair had been shaved to perform the procedures, but the bald area didn’t show prominently with my hair down. I knew what was there, but no one else would be able to see it clearly.

  I brushed my teeth and then struggled to get into the shower. Once I was in, I let the warm water wash over me and cried, trying to make sense of everything.

  How did this happen?

  Why is this happening to me?

  I looked at the bruises and marks all over my body as I tried to wash the hospital smell away. My head pounded with pain but I had to wash my hair. I felt my lumps and stitches. My scalp was red, swollen, and sore, and it stung when I applied the shampoo.

  Taking a shower and washing my hair consumed my last reserves of energy. Once out of the shower, I was too exhausted even to put my clothes on. I sat down to catch my breath and build up some energy to get up again, but I was too tired and in too much pain. I needed help to get dressed.

  “Deepak, I need help!” I screamed out in pain.

  “I’m here,” he said immediately, rushing in. He helped me get into my pajamas and settled me in bed.

  As I lay with Deepak in bed that night, I cried.

  “Please help me,” I sobbed. “Why did this happen? What have I done?”

  Deepak was helpless to console me, but he cried with me.

  “Here’s your diary,” he said, holding it out toward me. “Let’s keep recording things so we can see your progress.”

  When he’d played the videos he’d taken of me in the hospital, sometimes just a day or so after he’d taken them, it had made me upset because I couldn’t remember anything. This felt similar, but I knew he was right. I needed to write things down.

  I wrote my first entry.

  Wednesday, 6 May

  Came home from McDonald’s and Mandir (Hindu temple)

  Chapter 7

  I started to lose my mind, being confined to my bedroom, dressing room, and bathroom. I was afraid to go near the stairs, but my terrifying thoughts made me feel like I needed to get out of my bedroom. Lying down on the pillow hurt my head. Sitting up in bed hurt my head. Talking too loud hurt my head.

  What if I have another aneurysm?

  What if the drain comes out?

  What if my stitches come loose and blood gushes out?

  I tried to distract myself with phone messages and TV. But every time I watched anything for more than a few minutes, I got a feeling similar to the motion sickness I’d felt in Deepak’s car on the way home from the hospital. And when I tried to look at messages, I quickly got a headache, though all the well wishes made me want to get better quicker.

  I needed to get out of my bedroom.

  I called my mother-in-law on the intercom. “Mum, can you please help me downstairs?”

  “Are you sure, Kavi?” she asked, sounding worried. “Maybe we should wait for Deepak to come home.”

  “I want to surprise him and the children,” I said. “Please help me.”

  She came upstairs and held my arm as we steadily walked toward the banister. When we got to the stairs I looked down and grabbed the railing with my free hand, the other still holding on to Mum. I managed to get down one step, joining my feet together before attempting the next. But on my third step I was too tired to continue and turned around. I wasn’t going to be able to surprise Deepak and the kids today.

  Mum walked me back to my bed and I fell asleep for hours.

  Sitting in my dressing room, I took a brush to my hair and large chunks came out, alarming me. My hair had been falling out for a while and I was terrified of losing more. I’d always had long hair. I wondered if I should cut it short, as a sort of fresh start.

  I looked at my face in the mirror. I’d suffered from slight acne most of my adult life. I was always trying creams and masks, and getting facials. During my hospital stay, my skin had been beautiful, and I’d hoped it would stay that way. But already I was getting lumps and spots around my face and neck again. I wondered if I was allergic to something in our house. It was bad enough my hair was fal
ling out; now I was back to looking like a spotty teenager!

  As I got up and took my clothes off to step in the shower, I looked in the mirror opposite the vanity and was horrified. I looked like a child. I could see my bones through my skin.

  I quickly looked away. I had to put on weight. How could I let anyone see me this way? My posture was terrible, too. My shoulders were hunched and my head and neck were pushed forward.

  My self-confidence was shattered. I didn’t want to look at myself in the mirror, and I knew this wasn’t a good thing. I’d been through so much, it was important to be good to myself, and gentle. For now I would be happy with getting all the hospital off of me—the smell and feel still lingered.

  My brain worked overtime as I attempted to do more. Each day I tried to build up my stamina by introducing an extra chore to do each day. I was determined to conquer the stairs so I could have more freedom and participate in family activities downstairs. Every day I had Deepak or Jay or Jasmine help me practice walking up and down the stairs.

  In general, I put a lot of pressure on myself to complete the challenge, but today was special: today, I was going to try to join my family at the dinner table.

  I held on to Jasmine with one hand and the banister with the other. As I made my way down each step, I couldn’t stop looking at her.

  It must be so hard for you to see me this way, I wanted to say. I was upset for my children, for everyone around me, who had to see me like this.

  It took me ten minutes to come down fifteen steps.

  When we finally made it to the kitchen, the dinner table was beautifully set and the food was ready. Jay had folded the napkins in a design and placed them in the water glasses. So much effort had been put into our first meal together. We were all ready to tuck in and eat.

  I looked around the table at my family and couldn’t help myself. Tears rolled down my face. I was finally in my own home at my own dinner table with my family. I was so happy and felt so blessed. It was truly like a beautiful dream. Even though my self-confidence was low, I wasn’t taking anything for granted anymore. I was so appreciative of the present moment.

  I had to eat with an empty bowl by my side, knowing I probably wouldn’t be able to keep my food down. I vomited three to four times a day regardless of the amount I ate. Tonight would likely be no different.

  “I’m sorry, I couldn’t help it,” I said to them afterward.

  The kids were upset for me. They didn’t understand, particularly Jay. After dinner I overheard Jay express his concern to Deepak.

  “Why is mummy sick all the time?” “She’s going to get better soon,” Deepak reassured him. “She’s just recovering from her brain injury.”

  The twenty-one pills I had to take every day—a cocktail of codeine, Keppra, iron, paracetamol, ibuprofen, and others— didn’t help. I was so frustrated. I was never going to gain back the weight I’d lost if I couldn’t keep my food down.

  Even though I knew I just needed to get through one day at a time, and routine was of the utmost importance, my self-confidence was still so low. I wanted to be normal—fast—but my body had its own timing. I cried over anything and everything. I looked like an old woman, hunched over and sliding my feet forward with my head protruding in the same direction. I couldn’t look right or left properly. I was supposed to be looking after my children, and yet they were holding my arms and guiding me from one place to another, and it just didn’t seem right. I was embarrassed for my own family to see me this way.

  March 19, 2015 - In the hospital after my first operation

  March 20, 2015 - Insertion of drain op

  April 11, 2015 - Jasmine and Jay visit

  April 2015 - Deepak trying to make me pout

  May 3, 2015 - Hospital later days with Rajni and Manish

  1983 - Daddy memories—me, Rajni, and Sheetal

  1987 - Me, Rajni, Sheetal, and Sunny in our younger years

  May 23, 2015 - Bald patches aft er my hospital release

  May 11, 2015 - Clumps of hair falling out

  May 13, 2015 - Daily checks on weight gain

  Aneurysm and stent diagram

  Shunt and drain diagram

  Detailed shunt insertion diagram

  June 13, 2015 - Recovering at home

  October 26, 2015 - First vlog shared on the Brain & Spine Foundation website

  January 25, 2016 – Starting training with Brad

  May 21, 2016 – Building up strength at the gym

  May 25, 2015 – Checking weight and body shape

  May 29, 2015 – Gaining weight, checking body shape

  New Russian hair extensions

  May 31, 2015 – Prayers at home

  May 25, 2015 – First day out at Tatton Park

  Letter from hospital recovery symptoms checklist

  July 5, 2015 – Jasmine and friends doing the Color Run 5k to raise money for the Salford Royal hospital

  April 3, 2016 – Dynamo concert for Jay’s birthday

  July 11, 2015 – London visit

  July 13, 2015 – Deepak and our nephew, Dheyan, in Spain

  July 2015: Me and Jasmine chilling in Spain

  July 15, 2015 – Spain family meal with Uncle Rakesh

  Father’s day memories, me and Ravi Chopra

  July 27, 2015 – Friend’s wedding

  July 13, 2015 – Spain family: Avantika, Varsha, Tina, Tasha, Ambika, and Reaya

  On top of this, I developed an acute hearing problem that further isolated me. It was like I was a superhero: suddenly ambient noise in the room was amplified to unbearable levels. As I joined my family for dinner more often, no one was allowed to talk and they had to be very careful not to scrape or clang their cutlery. I was convinced I was going to lose my hearing.

  Even though the last place I wanted to go was A&E, I had Deepak take me in so I could have my hearing checked.

  “There’s nothing wrong with your hearing,” the doctor said.

  “How could that possibly be? The sound levels are unbearable,” I said. “The TV is impossible, I can’t answer the phone, and I have to keep cotton in my ears. There is definitely something wrong with me.”

  “This is normal for someone who has experienced what you have,” he said.

  “Why didn’t anyone tell us?” I was so frustrated.

  “It will get better,” he assured me.

  With the addition of this hearing problem to everything else I was going through, my self-esteem was at rock bottom. I knew I needed help. I didn’t want to expose my internal fears to anyone, but I understood that keeping them bottled up inside wouldn’t help. I was afraid to see people, afraid to speak up, afraid to look at this person in the mirror I didn’t recognize anymore.

  I decided to call my friend Emma and ask her to visit. I hadn’t seen her in five months, since before the incident. I was so embarrassed to see her in this state.

  I told Emma what I was going through: “My hair comes out in clumps on my pillow. I can’t walk anywhere by myself. I should be taking care of my family, not the other way around.”

  “I was quite ill, too,” she told me. “I lost my self-confidence. Someone advised me to see a therapist. It really helped.”

  I was hesitant to go to therapy. The idea carried a lot of stigma for me. But I knew I really needed help.

  “I can at least try one session and see how it goes,” I said.

  “I think you should.”

  “And I’m going to cut my hair,” I said, suddenly determined to do just that. “Maybe that will make me feel better.”

  My confinement was finally over. It felt like my first day on the planet. Almost ten weeks had passed now with no outside interaction for me. But today we were going to Tatton Park, a neoclassical mansion with a thousand acres of landscaped gardens and a deer and rare breed park. I was scared, nervous, happy, and excited, all in one. This would be a huge achievement for me: a real adventure—with my family! I wanted to show them I’d made progress.

  Deepak
was afraid my immune system was still too weak and made sure I was wrapped up in warm clothing even though the weather was mild.

  When we entered Tatton Park we slowed down to look at the wildlife. I was so overwhelmed seeing the deer. I just wanted to stay put for a while and watch them. I had Deepak park the car and we went for a short stroll.

  Very short.

  Minutes in, I stopped walking. “I know it’s only been a few steps, but I’m exhausted already,” I said.

  Even though I was tired, Tatton Park was like a balm on my soul. The park was heaven, so peaceful. I loved being outside, feeling the fresh air against my skin.

  I felt free.

  When we were done exploring the park, we decided to stay a bit longer and eat in a small café inside the park. The café was beautiful, decorated with wooden tables and floral tablecloths and chairs lined with vintage padded cushions. The walls had historic 1940s wallpaper and frames containing history about the park. The radio was playing wartime music and they served tea with heritage silver teapots into mismatched floral printed teacups and saucers. Overall, it had an old, comfy English feel about it.

  This was what I had been missing.

  I looked at everything around me. I noticed every single detail, smell, heard every sound. But suddenly, everything started to become too much. I started to shake. My ears began to hurt from the young children screaming and running around and from the clanking of plates and silverware. My palms began to sweat and I felt dizzy.

  I wanted to shout at everyone to be quiet, but I was in a public place. It was either be brave and stay, or leave the park immediately.