Maximus: My journey 8 years on

8 years to the day, Maximus was gifted to me…. My experience nothing more and nothing less.

It is coming up to 8 years since I was gifted with a kidney transplant, as I reflect on the day, I was contacted by the Organ Transplant team on the 16/04/2015 at 20:00hrs, I remember two weeks prior to the date, I was told that it would be unlikely that I would ever get a transplant. Every year for thirteen years I was told the same news, and every year I allowed the news to deflate my hopes to live a ‘normal life’. I had lived a life of survival, one day at a time, closer to death, which for many years, I admit now that I lacked value for life due to the fear of death and more so the fear of the unknown.

My mother was the only person, who really instilled hope and faith into me, she always has been my rock from birth to the present. I attempt to understand how many mothers can have so much strength to support their children and partner, I am humbled in my experience of being exposed to such love and empathy and I hope to manifest such love and understanding as I continue my journey of learning and understanding. My mother is a natural care giver with bias I would say that she is the best mother any child could be blessed with, she had accepted not only my illness, but my educational abilities, my eating disorder, along with body dysmorphia and most of all my behaviours of being immature, living in the day and getting in to trouble. Even though I came with all the above challenges, my mother had always kept her faith in me and knew that I would go on to fulfil a purpose greater than the one I had presented with pre-transplantation.

The lead up to the transplant was exciting and scary, the reactions of my mother and sister had borne further excitement, fear and shock. I have been in this situation a couple of times in my life and one out of three occasions I had been left deflated as the kidney did not match up with my antibodies. At the age of 34, I knew that there would be a high possibility that the news may cause further disappointment. In my family home we have a picture of a spiritual teacher, I remember getting on my knees and asking God to guide me through this, which reflecting felt like a support from something greater than myself. I was also aware at the time it had been 13 years since I had been waiting for a transplant, the number 13 in Punjabi is Tera, which translates in English to ‘it belongs to you’. I admit that my belief at the time was that the Transplanted Kidney would belong to me, but no one really knew.

My mother had contacted my brother as she was not in the emotional state to drive, neither was my sister, so my mother had phoned my brother and asked him to come home. My brother had attended a close friends sons funeral, we had both attended but I came home early as I had felt tired and wanted to avoid attending the wake. I was already in an emotional state, the fact that I had received the phone call had triggered even more emotion. I think that this also why I decided that I needed to hand it over to God as I understand it. My brother drove me and my mum to the hospital, during this time, I remember silently doing Mul Mantar (Holy verses from the Sri Guru Granth Sahib) repetitively. These are the words I uttered:

There is one God

His Name is truth

He is the creator

He is without fear

He is without hate

He is timeless and without form

He is beyond birth and death, the enlightened one

He can be known as the Gurus Grace

Meditate on the name

He was true before the creation

He was true when ages commenced

He is true now

He will always be true.

The above text supported ne to understand my powerlessness over the future, and accepting my place of being comfortable as can be in the unknown. In Punjabi/Gurmukhi there are thirteen words that make up the Mul Mantar again symbolising the importance of what thirteen means in Punjabi.

I have always played around with religious ideology since I was a child, one could argue that I am a sceptical soul, I say this because I like to believe that the sceptic can explore being open to all things and I do desire to be as open-minded as possible. I therefore think I connect more with Spirituality as I view it as being boundless in so many ways. I think a lot of people turn to God at times of difficult times, even those that say they have no faith in a higher power. This has been well researched in trauma literature especially by Peter Levine, Levine also speaks about the power of spiritual surrender and healing. Spirituality also gives me the opportunity to practice being present centred, which is important for me as I have in the past experienced depressive states due to focusing on the past and anxious states due to focusing to much on the future.

As soon as I reached the hospital, I decided to message one of my close friends, I messaged this friend as they, have always been the most logical, rational person I know, and had given me words that allowed me to stay somewhat grounded. I had also been posting on Facebook about my process. This was for two reasons, first I saw it as I wanted all my friends to be a part of the journey with me, as I was scared and the 196 likes and 117 comments, I received gave me a sense of connection, safety and belonging. The second reason as I reflect, it was a way of expressing how I felt during the 13 hours lead up to going down to theatre to receive a gift, the gift I named ‘Maximus’.

The transplant had taken 8 hours due to complications, my bladder had shrunk, which meant that the surgeon had had to take a part of small intestines to reconstruct my bladder. The surgeon had told me after couple of days that he had only had 1 banana to eat in the whole 8 hours of doing the procedure, I asked him if he believed in God, he said yes, how else was I able to be a servant of God and carry out this 8hour procedure on eating only one banana. The whole of NHS staff who supported me during the month I had stayed in hospital, I have admiration for, because at the heart of the care they had provided was compassion. I have been blessed through the struggles I have endured; I say this because I truly believe that there is beauty in the struggle. I for one have seen this due to all the support I have been given, especially from family, friends, lecturers, and work colleagues. I am so fortunate to have been exposed to so much love it has been a real privilege and I am so grateful for.

8 years before my transplant in 2007 I was offered a place to study at the University of Nottingham, I had the opportunity to meet so many amazing people from all walks of life and took the opportunity to learn from others. One of the things I did struggle with though was how people spoke about planning for the future, financially, family, materialistically and so forth and there was me who lived for the day, it was the way I had lived for as long as I can remember. I even connected with people who were living in the day especially those who lived by the rules on the streets and those who had also been on dialysis like me.  After having the transplant, I had continued to live this way for another two years. I bought clothes, trainers, went out all the time but I also learnt about meditation, journal writing, faith continuing to exercise, eating healthy and so on. I had hit the extremes of both sides, and this is what I understood at the time to be balance, but as I look back balance does not play with extremes and what I was practicing were more related to greed, attachment, lust, anger, and ego. I say this because I was focused more so on attaining outcomes rather than being process orientated.

So, it was through my experience and dialogue with others I embarked on a journey to plan to invest in the future I want. I live with an addictive personality which is attracted to extremes, I work three jobs, invest in my future, and continue to engage in self-care. There ought to be no problems. There is but one problem, as much as I am attracted to the picture of the future, it had led me to neglect the here and now. I can be present when I engage in meditation or even when I am practicing psychotherapy with clients. However, when I journal, I started to see a pattern emerge which expressed my needs and wants for the future, rather than what I have done today? how have I behaved today? what mistakes have I made and what learnings can I take from today? Such questions are important as they allow me to reflect and participate in daily inventory of self.

Having Maximus in my life gave me the opportunity to embrace 20 hours of extra time a week, as I did not have to have dialysis anymore. I utilised the time to support others, hence the second and third job. I had found my love for supporting others, but I had also found a lust for building towards the future I wanted. I became attached to a picture that I had created in my mind, but it was also a way of attempting to control the future. In November 2022 I had been to the accident and emergency unit on 5 occasions, and I had been admitted into hospital twice. No one knew this was going to happen, but it did, and it highlighted how much of life I do not have control over especially the future. I am not saying planning for the future is wrong but for me I must emerge it with living one day at a time, being present, becoming more self-aware and most of all living in gratitude.

I think it is also important to recognise that there are times when we must live in survival mode, pre transplantation for 27 years I had lived in survival mode, acted mostly on instinct, especially in fight state, as I consistently fought to stay alive, I now had a gift which has given me the opportunity to live life on life’s terms. Today I have been gifted with core-values which are Love, compassion, humility, truth, and contentment, and I get to practice these values, the truth is I don’t always get it right, but I do think that I am a work in progress and what I want most is to live in today and balance it out with preparing for tomorrow. What I choose to invest in every day is the practice of self-care through journaling, meditation, exercise, eating healthy as being things I do to practice self-love and self-acceptance rather than the need to attain happiness.