Happy Six Month-Aversary, New Liver!


March 26 marks the 6 month mark of the biggest day of my life (besides being born and giving birth), the day of my liver transplant.

People ask me how I’ve been doing since then, and while I feel very blessed to be alive, by all accounts this time of recovery hasn’t been without great challenges and self-reflection. Nevertheless, I remain fascinated in the journey and what unfolds with each new day. My scar and the transience of life is the first thing I feel each morning and the last thing I remember before sleep.

It has been a long road, perhaps longer than an average recovery time, with many unexpected medical setbacks that have become the status quo of daily life. In a sense, this has been the easy part; it is a physical reality that requires some patience. Just last week the gauze from my long standing wound came off; daily I experience echoes of pain from the scarring and dissolvable stitches deep under the skin that have yet to dissolve. While I am exploring ways of retrieving my energy sources, I suppose the mental and emotional build up and descent post-surgery has left me learning to be more energy efficient and realistic in how I spend my time. My priorities have become clearer; I’m less apologetic about who I am as a person. I take time for the important things, like spending time with my son and listening to the subtleties of sound and messages embedded into daily life.

It is humbling to be practicing (not to mention teaching) yoga in a body that feels raw and in many ways ill-equipped. All the same, it is enriching, and inspiring to continue to be involved with that things I love, and that includes the human experience. As I hear the stories of other beautiful beings in daily passing, rarely do I hear of an experience of which I can’t relate. We are truly in this journey together.

Being unable to do some of the physical things I used to enjoy has been illuminating; it has highlighted other resources and activities I enjoy, such as re-igniting my passion to create music and art. Even though I don’t always feel skillful in my body, most of the time I do feel whole and complete within myself. Taking stock of, and celebrating the resources available at any given time has been a valuable practice that has helped me remain grateful.

The emotional aspect of healing has been the most challenging aspect of the past couple of months. Wading through my life has become a regular pastime; re-experiencing the important moments branded into my memory as well as recalling the events that have slipped away seems to be a high priority of accepting my life as it is now. I suppose when life’s slate is nearly wiped clean, there may be a knee jerk reaction to want to hold on to as much as possible; a re-attachment process to life.

One thing has become clear to me, and that is, it takes time. I had no idea just how much time my body and mind would need to process. We live in a digital age when our expectations of ourself and other seem to speed up. However, with time comes clarity, space and acceptance of any situation. There is an Irish proverb that says something like, ‘When God made time, he made enough.’ It is remembering this every moment that is the challenge and the joy!

The Letter


Writing this letter has been a very important part of my healing, however, I am realizing that my journey of healing and recovery is just beginning. As the body heals and the ’emergency’ of life fades, the emotional and mental aspects of the past years find new and interesting hues of expression. A small step, sent to the family via the Royal Free Hospital Transplant Team to the anonymous donor family:

February 4, 2014

Greetings,

I am writing to express my deepest condolences for your recent loss of a family member. My name is Elizabeth Reumont, and I am the extremely lucky and grateful person who received a liver transplant on September 26, 2013. I was given a chance to live as a result of your loved one’s death.

I have thought for many months about the tremendous gift that I was given, and also about the responsibility I bear as a result.  I am the vessel holding a very sacred part of your beloved, and I take that as seriously as I hold my life; as sacred as the lives of all other beings.  I try my best every day to assimilate this new part of myself in with the old, to fully accept this gift as my own, and as funny as it may sound, it is not always easy. I was ill for quite awhile while I was on the transplant waiting list; in fact, it became my ‘normal’ way of being. I haven’t gotten to a point where I feel truly ‘well’ and ‘healthy’ yet, but during this transition I also don’t feel myself as being ill, or unwell. It is neither one nor the other. It makes me understand what being out of the body might be, and gives me genuine freedom knowing that there is something so much more in each of us than the body or the mind. I hope you find peace in knowing that your loved one is also free from the suffering that comes with being in a body that feels pain; free from the suffering that comes with having a mind that questions and perceives.
 Your loved one has gone back to her original state, her state of being beyond the body and the mind; the state that never ceases, never dies. The state that is only Love.

Having a chance to watch my four year old son transform from a toddler to a little boy, and being able to fully participate in life is something I was unable to do fully prior to my transplant, and something that brought me deep sadness as my health declined. The days became more and more about the if and when of receiving a new liver, and how to do the minimum needed to get by without pain. While I’m not yet fully participating in all of life’s rich tapestry, I am enjoying the things that I have been able to resume and do not take any of it for granted.

As my body and mind continue to heal, I am continually surprised at the lasting emotional impact the transplant has had on me, and on my family and loved ones. My mental challenge is to accept each day with its potential and its limitations, and stay positive and confident that in time, all will heal.

It has been four months since the surgery, and as my wound has still not fully healed, I am reminded every day of your generosity. As you know, many families over-ride the wishes of the deceased for organ donation, and because of this, thousands of people die every year who could be given another chance at life. I have been given that chance, and I have you and your family to thank.

How does one ever thank someone for saving their life? For me, it has meant examining my life closely and making changes, for I know that words will never express my internal gratitude. I do feel, however, that if I can live my life to the best of my abilities, to be kind and also patient with myself and other beings, I may in some small way help another being in need. This would make me very happy.

 My life today is a result of your family’s actions, and I hope that others will be inspired to do the same as you, to follow through with organ donations all over the world. We all inspire one another, and are all connected in some way. Please know that you have impacted many lives as a result of your decision to follow through with organ donation; most of all, my life. Also, please know that the life of your loved one lives on through me, and I will do my best to honor and respect this gift.

With all my gratitude and respect,
Love,
Elizabeth Reumont

From Hospital to Studio: teaching post-transplant


Last night I taught my first yoga class in 11 weeks. Hooray! I feel so blessed for every new day that I continue to feel stronger and better than I have in a very long time. I can’t promote becoming an organ donor strongly enough. Another being who lived a long, full life saved mine by simply signing up. You can too.

I will be teaching a few classes before my new years workshop at Indaba. Come along if you can! It’s always nice to see old faces and new.

Saturday, December 14th, 10am-11:30am Indaba
Wednesday, December 18th, 10am-11:30am Indaba

Otherwise, see you when I return to my normal schedule in 2014!

the blues (reds, oranges and greens)


Being in the hospital going on six weeks can sometimes feel like a marathoner at the twenty-second mile. “The wall”, as it’s called in marathon terminology, turns what for runners was a physical pursuit into a mental discipline, and makes every second of the last four miles feel like an hour.

On Friday, I hit my wall. As luck would have it, I am both an ex-marathon runner and practicing yogi, and know enough about physical ambition and mental focusing to see its relativity to long-term hospital stay. There have been a lot of shifting variables since I have been here at the Royal Free; in fact, nothing, except the facts that I had a liver transplant and am still alive has been pinned down. The two variables that have been identified most recently, my overall health and unending list of medications, are in an elaborate tango, pirouetting around one another in a constant dance of tension and re-balance.

Over the past week my pain medication has been reduced to a sixth of it’s original dose (from 30 to 5 mg). The steriods I’ve been on have been reduced by a half (from 20 to 10mg), and a variety of other medicines, all with side effects of their own, have been introduced and taken away like a change of clothing. My mind and body notice, but it’s my emotions that react.

Friday was the first day I realized something had dramatically shifted in my state of mind. I cried on and off all day, mostly because of what I identified as pain; my arms swollen and black and blue from the cannulas and jabs, my abdomen with a hole in it and a foot long drain running to the back of my liver, my back, sore from the inflatable bed and the collection of bile the drain is tapping behind the liver. But the more I considered the pain and worked with my breath to release all the held tension in my body, the more I realized I was actually deeply sad to still be here in the hospital. I had hit the five week mark on Wednesday night, and something deep in my subconscious was telling me I wouldn’t be here this long; I shouldn’t be here this long. On Saturday the relationship between emotion and medication became increasingly clear as I woke up feeling pain but was relatively happy; an hour later, however, after taking the steroids I became anxious and frustrated. A few more hours went by and I was hit with sadness. As I gazed out over the grey horizon, I asked myself, is this depression? After the lunchtime dose of medicines I was exhausted, but by evening I was grateful and embraced by Love. The array of emotions I experienced in one day startled me, and was augmented further by being asked by doctors, surgeons, nurses and transplant coordinators how I was feeling every hour or so. When I explained I had been having a difficult day, no one was surprised, and they all responded similarly by either encouraging me to keep my chin up and keep going because I was doing so well and almost at the end of the road, or sympathizing, stressing that I had been through an unusual amount of complications and anyone would be expected to have bad days through this process. Not one of them mentioned the impact of the medications on my overall well-being, although when I related the two together, no one denied the strength of the side effects or symptoms of withdrawal.

Today has been a better day, the ward is relatively quiet and I’ve had the room largely to myself with only one other patient in the opposite corner. I also had the benefit of seeing my father, whom I haven’t seen in over two years, as well as my son and husband, which gave me something to look forward to and cheered me up for a good part of the day. Even with all the activity that comes along with special visitors, I have remained acutely aware of the rising and falling levels of pain and emotion in my body.

It is uncertain when I will go home at this point. My donor had a common virus called CMV (cytomegalovirus) that many people have dormant in their bodies but that I did not have. Since I am on the immuno-suppressant medications, the virus was not only given to me but became active, and I have been unlucky with the anti-viral IV fluids; the numbers continue to rise instead of fall, and as a result tomorrow they will assess what to do based on blood tests. To add to the complexity, my arms are so battered that I’m no longer able to withstand a cannula in either arm, meaning they may need to find another location for the cannula in order to get the IV into my blood. The other issue is the drain, which is still working to empty the ‘collection’ of bile and infection that has accumulated from the bile leak. The doctors have maintained that it may take weeks before the drain can be removed, but luckily, as soon as the virus is being managed,  I will be able to go home and manage the drain with the help of local nurses.

Despite the fluctuation of the medicines, emotion and mental state, I continue to feel mainly well and forever blessed by the presence of family and wonderful friends. When I have a blip of the blues, I am able to bring myself back to the big picture, which is to get home to my family and to have a Love-filled, happy existence outside of the confines of the hospital. I am able to acknowledge the reds, oranges and greens of the pills that will eventually go as I stabilize into four magic medicines that I’ve been told I will have to take for the rest of my life; I’m also more acutely aware of the various hues of emotion and their potential origins. This will inevitably continue to be a rich dialogue between my smaller, ego-bound and ego-driven self, and my cosmically-connected. Love-filled and Love-fueled Self, aware of the Oneness all beings.

There are multiple factors in all of our lives that contribute to emotion and mental state. Many aspects of what we put into our bodies and minds are not unlike the hospital drugs I’ve been taking; they are mind-altering. Consider the food you may eat, the media you consume, the messages you tell yourself and the messages you receive from others in your life. Any or all of these sources could act as a drug and have side-effects, addictive potential and withdrawal symptoms. We all have a choice about what we let inside our hearts, minds and bodies, including how we fuel and nurture ourselves. It is well worth it to once in awhile become acutely aware, even for a short period of time, of how these outside elements affect thought and behavior. We may even try eliminating some of the elements identified as ‘toxic’ and see how we react.

To be a ‘sakshi’ is to be a silent witness; one who observes from a distance without judging or feeling without any sensation based on the observations. The sakshi is greater than pleasure and pain, virtue and vice, likes and dislikes; the sakshi is being colorless, self-luminous and unaffected by the color of emotions, unaffected by the rainbow of elements that bring individual suffering into focus. Being a sakshi enables us, even for a moment, to see through all the elements and veils of mental thought and emotion we wear; it enables us to return to our source as Love itself.

The bouquet of life


Five weeks. Five weeks! I never planned on a stay in the hospital this long. This wasn’t how my transplant recovery was supposed to go.

These are the workings of the mind and the origin of my tears throughout the night and into the morning. It was a rough one. You see, objectively speaking, I’m doing well. My liver remains functioning better than it has in ten years (!), and my vital stats such as blood pressure, temperature and weight are all in the normal range. The surgeons are ecstatic, the doctors satisfied. Except, I can’t go home and am still in enormous pain from the wound, drain and arm trauma.

But this post isn’t about that. This post is about observing the seesaw of thoughts and fragility and unpredictability of life. This post is about the limitations of the mind, my mind, in circumstances when it isn’t controllable; when emotion takes over the head space either by revolt or resignation. This post is about turning sadness and pain into laughter and joy when the atrocity of a situation turns to comedy,

This morning when I woke up, tears stained my face. During the course of the night I had four different cannulas put into my arms and removed; ending with a pediatric cannula that was too narrow a line to get the anti-viral drip into my vein. As a result, two half-hour drips took the entire night to get into my system. Throughout the day, the pain took over, and as nothing quite went according to plan; I was beginning to lose the plot.

Day turned to night, and I was in a head space that is anything but Positive, Grateful, Loving. Today was about feeling low. Feeling stuck. Feeling unshakable pain. It’s true, they have lowered my pain medicine throughout the week and it is now wearing so thin I can sense the tissues of my body at work as they bind to heal the wound and compete with the hole in my abdomen where the drain is simultaneously working to empty the bile from the ‘collection’ above the wound from the duct leak last week.

My husband, who graciously came at lunch to cheer me up, heard my sadness and resignation through the phone and made his way to the hospital to again turn my frown upside down. And then, wonderfully,. a guest turned up to my bedside before his arrival. It was Professor Malaga, the world renowned transplant surgeon with an infectious smile as large as he is tall. He poked his head through my curtain and saw me curled into a ball with tears in my eyes, and he laughed. He came into my bay and hugged me and kissed my forehead. He told me the amazing news that the CT scan I had earlier in the day was ‘fantastic’; my liver looked great and the bile ducts were no longer leaking. He laughed and said he was thrilled. I felt like an idiot. I told him how I’d stupidly spent the day in pain and he took the time to ask where, and look at my arms and belly. He said I deserved to be low, I had every right to feel sad, but that I should forget about the pain, I should forget about the sadness. He reminded me that I have a new life; he reminded me that in six months I would be able to do things I never thought possible; in six months there would be no cannula, no pain. I took his hand and thanked him, told him what a beautiful smile he had, how lucky I was to have such an amazing doctor. He kissed my cheek and said he would be back the next day. I finally heard what I needed to; my attitude had been adjusted and by the time my husband arrived we could spend our time fantasizing about where we will go on our first trip out of the UK in nearly two years. It was the best ‘date’ I have had in a long, long time.

After he left, the room settled in and the real drama began. First, the woman in the bay next to me lost her shit, literally, all over the floor and all over herself. I was asleep, as were the two other woman in the room, but the stench woke me up and I discovered her traipsing around with her soiled socks and gown spreading the magic all over the floor. Next, the woman across from her, on my diagonal, began to vomit. First on the floor, then outside of the room where she made her way with her arm in a sling held up by a pole. I went to seek the nurses who moved like turtles anticipating the scene that awaited them. The third woman, across from my bay, started to shout for a glass of water, that she was trying to sleep and it smelled like a toilet. She increased the volume as she started complaining about the hospital’s cleanliness and nurse competence. It was truly a scene from a comedy.

I found solace in a green plastic chair outside of the ward and nodded off for a little while. When I came back I saw the endings of a mediocre cleaning job that was in no way sanitary or complete. The entire ward smelled of a fecal mishap, and the woman responsible had since moved to the toilet where she continued to not only spread more of her waste product, but also hum loudly. I then witnessed her return to her chair where she recommenced eating and humming (both of which, non-stop activities since she entered the hospital the night prior). The woman who had been vomiting paced the ward and asked for the professional housecleaning team to be called.

Eventually, the room was cleaned a second time and the smell quieted to soft bouquet that enabled us to re-enter the room. This is when the pooping patient peed on the floor as she continued to hum, and eat. It would be a long night.

I got into bed, put on my sound-proof ear-set and fell asleep until now, 4.30am. The woman is humming loudly and has just done something with a fair amount of stench to it. I return to the green plastic chair outside of the ward after notifying the nurses. Now, however, I’m smiling, recounting the words of Professor Malaga, knowing that there will be an end to this saga soon and some other story will fill it’s place, if I let it.

I sit, recounting the past weeks, and begin to laugh. What a trip it’s been. I signed up for this, and despite the tears, despite the sensory overload and discomfort, I would do it all over again. I am alive. I think of my donor and the miracle that is unfolding in my body. I have someone else’s body supporting mine, all the time. A stranger gave me the most tremendous gift without knowing it, without knowing about all the smaller gifts that would come with it. These come in the form of life lessons that have helped me navigate the sticky and downright silly situations occurring on a floor with 34 other very ill patients with ailments crossing the physical-mental divide.

Returning to the room, I hear the loud humming of my roommate. She has locked herself in the toilet and the nurse is trying to get her to unlock the door. It is 5.30 in the morning. The sun will rise, and all three women from the room will move on to other destinations. The pooper and vomiter will go home, the complainer will go on to have a long awaited surgical procedure. I smile, knowing  that I will have a chance for sleep, knowing that in my own time, I too will move on.

%d bloggers like this: