Chapter Thirteen: Alive

No one told me that the hospital social worker would visit me or who she was.

I could only guess that my family was so worried about this dark depression that had become me that they needed someone outside our family circle to shake me up and to find that ball of energy and enthusiasm that was still hidden deep within me.

I wondered if she was a dream when she sauntered into my room with her warm, glowing eyes and encouraging smile. I could have sworn that I had seen her before or at least felt her presence before in this hospital room. I could have sworn that she had once said to me when I was half asleep and catatonic in depression: “I know you are sad and mad. But, it will get better. I know you do not believe me, but it will.”

This time, she was so close to the bed that I could smell the creamy, scented lotion off of her pearly skin. I glimpsed her out of the corner of my eye, but quickly faced back to the wall and into the incubation that I created, but she said she had something to show me.

“What do you have to show me?” I mumbled to the cracked white wall rather than to her. I did not want to admit to her that she had sparked a twinge of curiosity and thrill in me.

She touched my shoulder and my automatic reaction was she flinch, but her touch was strong and comforting all in one. It was the first time I did not resist someone’s touch. She said softly: “It is a surprise. Won’t you come with me? Please.”

I slowly turned away from the wall to meet her piercing gaze. I opened my mouth to make an excuse: “My family is not here. I can’t just go with you.”

She ignored my response. Rather, she sat on my bed, rubbed my shoulder, smiled gently, and just said: “Your family knows about the surprise. It is just for you. Please. Come with me.”

Her hand fell from my shoulder and into my good right hand (my left arm was still hooked up to the IV pole) as if to say that I was not allowed to make anymore excuses. She squeezed my hand. Before I knew what was happening, there was a nurse at my side. Both of them attempted to help me out of the bed. I was too tired and exhausted to even maneuver myself out of the hospital bed and gritted my teeth with each clumsy movement, but my curiosity about this surprise was greater than this exhaustion. I almost fell when I was out of the bed, but the nurse and social worker were quicker than my body’s automatic response and they held on tight to my arms.

I was drawn to this kind woman who was bringing me to some surprise place, but each step was painful and tiring. I drew in my breath with each tiny step. With each inhale, the nurse and this woman held on tighter to guide my IV pole and me down the hallway. It was an entire different world outside of my sanctuary room. The buzz and hum of doctors and nurses rushed past me. It had been so long since I saw light, and the glaring and bright lights in the hallway hurt and burned my eyes. I blinked several times. I sneaked a reflection of me in the polished hospital floors as I tottered slowly to my surprise. I could barely recognize who I had become.

We went into a small alcove of a room with a polished rectangular table right in the middle. The walk to there was probably only a minute for a normal person, but it felt like the longest journey to me. The lights were dim and the air was chilly and made my teeth chatter. I wrapped my arms around me to try to warm myself up. Seated around in flowered cushioned chairs were all adults in hospital gowns and with lightless and lifeless eyes. Little did I know that I appeared just like them except I was the youngest one there. I sat down in the chair closest to the door so I could have an easy escape if need be—not that I could really escape with my fragile legs and IV pole. I was a combination of curiosity as to who these people were and soured belief that this was a waste of my time.

It turned out that the social worker had brought me to a support group for transplant recipients and transplant candidates. Each person went around the room to share his or her story. Their stories somehow intertwined with one another with heartache and triumph. One middle-aged man said:

“I was on hemodialysis for 10 years. 10 years of my life. When a match was finally found, I thought I could have 10 years or more of my life back. But, it was rejected. I was put on the list again. It is looking pretty bad that I will ever find a match again. So, what are my choices? Go on dialysis. Yes, thank God for dialysis. But, what kind of life is it on dialysis…a machine doing work for you and you can’t even live your life. I keep winding up back in the hospital again and again with one infection after another. Is that life? I don’t think so. I do not have any family, so no one can donate their kidney to me. So, what is the point of fighting then? I’m going to die anyway. So, what is the point of living?” His voice cracked when he said “living” and he grabbed a tissue.

I gulped. I thought of my Dad, sister, my aunts, and my giggly girly friends who had all been there for me after my second transplant and even now as my most bitter self emerged from my kidney rejection. Guilt shot into and spread throughout me. How could I have pushed them away? They loved me and I had turned away from them when they were there for me. At least I had family, unlike this man who had struggled with dialysis and now waiting for another transplant. I looked at the floor, ashamed.

Another man shared the gift of life that his wife had given to him, but that the kidney that she gave to him was rejected and that he lived with this guilt that she could never have her kidney back and that he could never make it up to her. His wife with a poof of blonde hair and watery eyes found his hand and held on tight. I was surprised that she was here with us to hear her husband’s guilty confessions. She said to him softly: “You have nothing to feel guilty about. I would do it again. In a heartbeat. Life with you sick is better than life without you at all.”

He said: “I know that, but I just want to get rid of this guilt. How do you get rid of it? It is just there every single day. Guilty for living because of someone else either dead or alive. You can’t win. You can never win with this and in this life.”

The social worker went to talk to them privately, and my mind wafted to thoughts of my organ donor and her family. What were they going through now? It had been almost three months since their daughter’s death. My transplanted area throbbed when I thought about them. I winced when I felt the throbbing ache. If I died, then her kidneys would have gone to waste. I could not do that to her. I could not do that to her family.

The stories continued on of family members that donated an organ, rejected organs, endless waiting and hoping for the perfect match, exuberance at finally living life after a transplant, and a collective guilt and gratefulness that never vanished to the deceased or living donor as time moved forward. I listened to the stories with intrigue, interest, and a tumble and rush of emotions.

I was angry at myself for wallowing in my self-pity when it had taken only three months to receive TWO (not ONE) kidneys. I was sad at the unfairness of who is dealt this hand of health problems that never ended. I was overwhelmed with the realization that organ donation and transplantation really affected every single person on this earth because we are all going to die someday. These people that sat before me and I was going to die someday so maybe our organs would save other people who were struggling their health problems, just like my organ donor and her family had saved my life. We were all connected. It was weird and amazing rolled into one. I was happy that I was still alive and that I was young enough to still fight and improve, yet bitter at myself for not realizing that I had not used my youth and attitude to fight back. Instead, I had become vulnerable and weak to depression, darkness, and at the clutches of my own worst enemy self. When it finally time for me to tell my story, their eyes penetrated into mine.

I was speechless for once in my life.

What could I say to them? I did not have to wait years for my second kidney transplant. I had experienced dialysis when I was a tiny tot, but I did not remember it. I had the most loving and supportive family that one could ever imagine with dealing with my moodswings, reminding me to take my medications, and just sitting and being there with me. I had friends who had called and laughed with me after my second transplant. I found my voice that was weak and finally said: “All I want is my life back. I just want to be a normal teenager that complains about too much homework and annoying teacher. I want to fit in with everyone at school. I want to go shopping and talk about boys and clothes. I do not want to talk about or think about my health, my kidneys, aching hip and lower back, needles, and bruises anymore. Life is unfair. I feel old. I do not feel 12-years-old and going on 13-years-old. Why did this happen to me? Why me?” My voice broke at the end. I started crying so hard that I hurt and ached all over. My body shook violently with sobbing tears. I thought I was going to explode.

Arms were around me and I looked into the eyes of the social worker and then into the eyes of all the other transplant recipients and candidates who stared at me not with pity, but with complete and total understanding and sympathy. For the first time since my kidney rejection, I did not feel alone. I was not alone.

Once I opened my mouth, I could not shut up. I continued on. The words flowed and fell from my heart and cluttered mind on to these group of people who understood because they had walked and were still walking in my shoes. I expressed sadness and anger that someone my age should not have to deal with all this, but here I was dealing with everything. I knew I should have felt strong and invincible, but that I felt mostly anger, hatred, hopelessness, sadness, and unfairness. As the words trickled and poured out of me, a huge weight was lifted and I felt freer than I had felt before I was admitted to the hospital again for the kidney rejection. I would even say that a bit of happiness had started to slip into me at the point of sharing everything aloud to familiar strangers. None of them said anything in response to all that I said, but they did not have to. They knew.

I never really saw any of these people in the group again and I never saw that social worker again. I had only seen them in passing and exchanged a few words, but that support group was the beginning of alive and life for me again. I had forgot and given up on my family and friends, my organ donor and her family, my life, and, most of all, myself. It was time to get everything and everyone back and make everything right again. It was time for me to believe in myself again and for hope, inspiration, and my life to begin again.

In the next day or two after the support group meeting, I began eating. I somehow believed that feeding myself would be equivalent to nourishing my soul and giving me back some energy and spirit. It had been days since food had any taste or flavor. When the latest tray of food was slapped on to my table, I was suddenly ravenously hungry. Red Jell-O and crackers were ever so tasty. I devoured every morsel of food and flavors spurted into my once dead taste buds. The food gave me a wee bit of oomph and jolted my dormant mouth and body to wake up. When my Father came to visit me, we watched TV together in comfortable silence and his hand would fall on top of my bruised knuckles on my left hand with the IV needle poking out. I would catch him with a simple smile on his face and was overwhelmed with simple moments like that just with him. I laughed with my friends who phoned me. When laughter first erupted out of my mouth again, it was a foreign and brilliant sound that I embraced. I wanted to keep on laughing because it reminded me about my living life.

I played Scrabble with my aunt again. Auntie Terry said: “That word does not exist. You are cheating.”

I smiled mischievously at her: “It exists in my world!”

She laughed and we would play all over again and again.

When my family and friends were not there to keep me company, I forced myself to get out of my hospital bed to roam around the hallways with a serene smile, curious eyes, and questions and chats with nurses again who were always kind enough to talk with me when they had a free moment. They would say to me: “Out of your bed again?! That is what we like to see!”

“Me, too,” was my simple response with a bright smile.

At night, I dreamt again of my sweet organ donor and us coloring and drawing pictures of the sun, blue skies, moon, and stars. In my dreams, she stared at me with wide eyes and took my hands in her small and delicate ones to say that everything was going to be okay and that her life and my life were not going to be wasted. Her voice was cool and sugary like honey. “There is something bigger for us, Mary. Wait and see. Just keep fighting so we can start living. So, you can start living.”

As the days progressed, I knew that I was getting stronger and that everything was going to work out. I was alive again.

The mind is a powerful thing and boldly more powerful than the physical body. As soon as a change in my mind had taken place, a miracle seemed to happen in that the anti-rejection medication began to work full throttle. The full week that began as a tortured dreariness and depression had ended with my original bubble of happiness and optimism. My medical team gave me big grins and glittering eyes that my transplanted kidneys were back in functioning and top-notch order and, if all went well, I would be out of the hospital in just a couple of days. Sighs of relief and delight seemed to occur in unison amongst my family and friends. I was just as enthusiastic, but suspiciousness and cautiousness still lingered in the back of my mind. I was scared to feel overly hopeful again. What if the good fortune was only temporary? What if I did manage to leave the hospital and I had another kidney rejection or if my kidneys even failed? Would my spirit and I be able to withstand any more obstacles? I attempted to stay calm, cool, collected, and especially patient to see what would happen in the next couple of days. I refused to expect anything until I was officially out of those hospital doors, yet I refused to completely let go of hope. Yet again, the waiting was the hardest part.

When the company of doctors, nurses, and my family and friends did not surround me, I occupied my mind and waiting with trying to answer with something positive: “Mary, what are you going to do in your life before you die?”

I reasoned that I must have some sort of purpose in my life because I was still alive. The wheels in my brain churned at lightning speed and a million images raced through my mind. I suddenly had a volcanic urge erupted out of me to make a difference in this world. I imagined helping others and touching people’s lives with my personal experiences, struggles, and triumphs with my health. I conjured up dreams of telling others on organ donation/transplantation and that the reason for obstacles, troubles, pain, and heartaches in life was for us to become stronger and to truly appreciate the glory, magic, and sweetness of life. This dream, purpose, goal, reason, epiphany, lightbulb moment, or whatever many words could be used was the final push I needed to fully recuperate and get out of the hospital.

Going into a brand new week, my nephrologist proudly announced that I could leave the hospital and that I did not have to go on hemodialysis. My kidneys were still functioning and here to stay with me and grow with me. It was a declaration from him to me that I could now officially lead and live MY life. A lump formed in my throat as to how immensely lucky I was to still have my functioning kidneys and, most of all, my life to now live to the fullest.

When I walked out of the hospital doors with a new and easy stride because my hip and lower back barely hurt any longer post-transplant, I thought to myself that if I had not experienced my horrid kidney rejection and all the physical and emotional turmoil that went with it, I would not be able embrace and love life as I did and still do. With the summer heat and tasty air swirling around me, I was convinced more than everything that all these events and experiences in life happen for a reason. It felt as though I was leaving my old life to welcome a new one, and that created a new pot of fear, nerves, excitement, and uncertainty in my stomach: What was normal really like and would I be able to tackle it all—school, family, and just everyday routine activities? I had a brand new blender of fearful and high-spirited feelings of now living out my life and up to the promises I made: Taking care of and nurturing these kidneys that gave me life and allowed me to live, not dwelling on anger and letting hatred and depression take over me and run my life when times were tough, and fulfilling these newfound dreams and goals of helping others and making a difference. What if I failed in living life? Would I and could I take this all on and more for the world and for myself?

On the car ride back to home, I stared out at the whizzing trees and skies and it was clear to me that life was a funny and miraculous combination of taking control of it by making decisions, but also dealing with what unexpectedly happened for a certain reason. I had my answer and a calm determination blanketed me. I was not going to let obstacles, challenges, bitterness, or my own worst enemy self stop me from all that I was going to do in my life. I could and would tackle and take on what life brought me. I could and would take all these experiences and events and make them into something positive. I would create my life. I was alive. My precious kidneys from my more precious organ donor and her family, all my experiences and stories, and me were going to take on the world and make something of my life that I was more than ready to live to the absolute fullest, above, and beyond.


Jennifer said...

Mare, I remember the support group. Really powerful right up with all their personal stories. Glad that you fought back like you did. You are one tough cookie!

Maria said...

Wow, that's a very powerful chapter, Mary. Isn't it amazing how much the mind controls the body, most of the time subconsciously. This is a fabulous example of that. Go Mary!!

Eva B said...

A really uplifting chapter, Mary. And congrats on the first birthday of this blog!

Miss Mary said...

Aww...thanks, gals, for all the support!! :-)