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My journey!

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This first article is about how I coped with the pre-transplant waiting period and returned to work afterwards.  My involvement in the Ropes course was months before I went into liver failure.  It epitomized the way I liked to spend my discretionary time.

Once I went into liver failure, I soon realized I could no longer participate in activities like this. The attention it took to protect others during high elements exceeded my capacity as encephalopathy made me forget small but essential steps. I had to quit my involvement as a course instructor, although I continued to take my students to participate in the ropes course challenge. Advance magazine

While I was waiting for my second transplant we were contacted by a local newspaper,  the Hollywood Gazette, in our hometown. We were happy to again tell our story. Any way to get the word out about organ transplantation is very important.

This third link is to a feature about me in the Florida International University Magazine. I remember being very nervous, not about the article, because again- any way to get the news out about organ transplantation is a good thing. I was nervous because the practice of this profile was to use a full-length photo. The prior featured alumni was a theater major who made it big in Hollywood!

The link to this article in OT Practice, is clearly the most informative and you will see it linked elsewhere on this website. I wrote this by invitation to contribute to a series of occupational therapists who, themselves had experienced a disabling condition. It was the easiest piece I have ever written as the words of my experience as a patient were so easy to express and the message I wanted to convey to other patients and to health providers, so strong. I am honored to have this article be included in the handbook for transplant candidates at the University of Miami-Jackson Medical Center.

The case of competing demands

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I have come to realize that the problems of life and living that come with all aspects of the transplant are due, in part at least, to the serious medical issues that are involved. Think about: liver disease, organ failure, waiting on the list, then surgical healing, lab values, rejection, infections, and the many other medical problems the transplant team deals with. Thus there is little to no time for the transplant team to sit and explore problems of living.

I know myself, I would have many questions about why I was so forgetful and could not sleep, and so on. I would get to the Dr.’s office and my attention would refocus on my physical health, my lab values, and my MELD score.

It’s not that the transplant team is not concerned, I know from working closely with them, they are very concerned. Each of the professionals on the team have a purpose, a responsibility, and unless you have access to the person responsible- if there is one-it may be hard to find these answers. There lies the case of competing demands…

The ridiculous contest of who has experienced more trauma

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Writing this book has brought back so many memories and made me think so deeply about misfortune and challenge people experience. I have always been ultrasensitive to people who have commented or complemented me on being strong through what I have gone through. And there have been people who have commented on their challenges with health. Generally, these comments are followed by the caveat that: “of course this is nothing compared to what you have gone through”. The number and complexity of the challenges we face in life is never a contest. My heart aches for people who have lost a parent at a young age, a spouse, or even more incredibly a child. It aches for people who have lost comrades, friends and family in war. Or who have witnessed or been a victim of violence.
My situation is, for me, a merely quirk of nature. An unfortunate circumstance, almost like being in the wrong place at the wrong time. Yet, similar to other losses they have the potential to shatter or sense of the way life should be and challenge our belief in ourselves. My losses are not of the unplanned or early death of a loved one, they are losses of valued parts of myself. That is why I talk so much about the need to hold on to the self that I have. When I refer to the self that I have, I am referring to what is in my mind, what is in my soul, and everything I care about. I have lost things that I care about in terms of physical and cognitive function, things like balance, which prevents me from ice skating, skipping, running, dancing, or doing any of those athletic things, and memory, impacting recall of words, names and making commitments to things I forget to follow through with.

What I have not lost is the people who are near and dear to me. I have my regrets, not because I did anything wrong, but for not being there for family and friends when they needed me. Being in a coma in the hospital when my cousin Stacie stepped in to give the eulogy at my father’s funeral. Being in the hospital after my second transplant when my sisters were faced with moving my mother to an assisted living facility. Needing to leave my students in the middle of a semester, attending to my Mother at one sister’s wedding while asking Kar, with severe spinal spasms l he had to prepare a dinner for 40 at the last minute when my other sister’s partner bailed. My brother John thankfully was the one who was there for him.

There is more, much more, However the points I want to make is:

1) When we are going through pain or illness we become self-absorbed;
2) There is no comparison between one person’s challenges, and another; and
3) When we are sick and others are left to pick up the pieces, it is no fault of our own.

Finding Life Beyond Trauma: Can Trauma Be Cured? | Patricia J. Scott

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What is Trauma?

Trauma is a response our body produces during a highly stressful event. Highly stressful events can include an accident, a natural disaster, or political situations. There are many ways in which trauma can show itself. The symptoms can be physical and emotional. Trauma can have a long-lasting impact on a person’s mind. High risk medical conditions can be traumatic, though, it is not likely that everyone who experiences an extremely stressful event will go on to develop trauma.

The American Psychological Association, also known as APA, defines trauma as “an emotional response to a terrible event like an accident, rape, or natural disaster.” But the definition falls wider. Depending on the person, different events or situations can prove to be extremely stressful. A traumatic event can threaten a person’s sense of security. After experiencing trauma, one can be left feeling extremely unsafe and vulnerable even in settings that seem normal to other people. In my case trauma resulted from an ongoing series of health crisis over time. Every time I would start to recover and feel good from one incident, I would be struck with another. I started with a strong belief in my power to control what happened to my body through diet and exercise and that belief eroded over time. Feeling isolated and overwhelmed after an event is what can result from trauma. I felt a total loss of control. For some, the symptoms of trauma can be resolved in weeks. But for others, the trauma can last for years or decades. When symptoms persist for a longer period of time, the trauma can develop into post-traumatic stress disorder, a mental health disorder.

In my situation with liver transplant, I experienced trauma in several ways and this trauma was from several different types of experiences.

Types of Traumas

          There are three main types of traumas: acute trauma, chronic trauma, and complex trauma. Acute trauma often results from experiencing a single stressful event or situation. In my case, following hepatic artery stenosis,  I was having monthly procedures to dilate my bile ducts and I would have frequent infections. I was taking them in stride until I needed an IV antibiotic which blew veins and required a central line. When informed, I was not concerned. During hospitalizations, central lines were very familiar to me. Then the MD misplaced the central line causing a stroke.  I ended up in ICU on a ventilator. Following this trauma, I developed intense anxiety every time I needed the monthly procedure. Acute trauma can result from situations or events such as a car accident, the death of a loved one, being a witness to violence, and a single instance of assault or abuse. The misplacement of the central line was equivalent to an assault.

Chronic or repetitive trauma results from experience of multiple or prolonged traumatic events. For me, and this is supported by scores of transplant recipients, the time between laboratory testing and receiving results is traumatic. This started soon after my transplant when I would receive news from the transplant team informing me to come to the hospital as my routine lab values were in the abnormal range—often significantly. The fact that I did not feel bad elevated my anxiety. I could not trust myself to know when something was wrong. This fueled my sense of being out of control, lost and vulnerable.

Complex trauma is the result of experiencing stressful events, which include interpersonal relationships such as family violence. Other types of traumas include developmental trauma, vicarious trauma, historical trauma, and intergenerational trauma. Every type of trauma can result in similar physical and emotional symptoms. I do not have any examples of complex trauma to offer you.

Symptoms of Trauma

          Different factors ultimately determine how a traumatic experience can affect a person. These factors include an individual’s unique qualities, mental health conditions that already exist, previous traumatic events a person might have experienced, and how a person handles their emotions and reactions to experiencing a stressful event.

Here is a list of psychological and emotional symptoms a person might experience as a result of trauma:

 

·       Fear

·       Anxiety

·       Anger

·       Sadness

·       Insomnia

 

·       Agitation

·       Shame

·       Confusion

·       Depression

·       Denial

 

·       Headaches

·       Fatigue

·       Numbness

·       Guilt

·       Irritability

·       Racing heartbeat

·       Perspiration

·       Hard time concentrating

·       Hopelessness

Can You Heal from Trauma?

While many trauma symptoms begin to fade over time, it can still be difficult to heal from traumatic events, as they leave unseen scars on your mind. At one moment, you can be feeling good about things, and in an instant, something can trigger your mind, bringing back all the emotions you felt during a traumatic event. The memories can be painful, and the emotions can certainly be overwhelming. But the journey to recovery and healing is not impossible. In addition to time, different types of therapy can help one recover from physical and emotional trauma.

What most people are unaware of is the fact that trauma can have a major impact on the brain at a physical level. The makeup of our brain is altered due to extreme emotions, impacting how a person behaves and how they experience the world around them. So, when we talk about healing and recovery, it concerns both physical and emotional health.

Healing and recovering from trauma look different for every individual. Some forms of therapy may be effective for one person but entirely ineffective for another Everyone has a unique ability to heal. However, some factors play an important role in one’s recovery process. These factors include how a person copes with difficult emotions, beliefs, perception, resiliency, and interaction with others.

The ability to actively live in the present without being overwhelmed by thoughts and sensations related to the trauma is paramount to healing and recovery. If the trauma is completely in the past, recovery does not imply the entire absence of memories or sensations related to the traumatic incident; rather, it means to make an active effort to put the traumatic experience and any feelings attached to it in the past, where they belong. What happened in the past has no control over your life now. Learn how to focus on living in the moment and enjoying the life you truly deserve.

With an ongoing trauma such as chronic health challenges, it is not uncommon to lose all sense of self efficacy, or the ability to personally control external influence. Keeping this in mind, let’s look at some of the ways a person can begin their journey towards recovery:

  • Exercise

This is one of the most highly recommended ways to cope with the impacts of traumatic events. After experiencing a traumatic, the human body’s natural equilibrium is disturbed. Exercising can help restore that balance and repair nerve damage. The recommendation to incorporate at least thirty minutes of physical activity in your day to significantly help improve your physical and mental health, may be outside the capacity of a person with complex medical challenges. Exercise is still recommended. Even if it is slow walking or chair yoga.  While exercising, focus on the movement of your arms and legs. Focusing on your body’s movements helps distract you from negative thoughts or emotions. Exercises and activities such as walking, yoga, weight training, and martial arts are great ways to get your body moving.

  • Socializing

Connecting and socializing with others is an essential part of healing. There should always be a healthy balance between spending time on your own and spending time with others. Even if you do not feel up to it, allowing contact from and with friends or family for support can help. Trauma can cause people to isolate, and isolation is unhealthy. There are also behavioral health providers trained to help you. Behavioral health providers and counselors listen to your feelings and thoughts without judgment. Engaging in different activities, reconnecting with old friends, and picking up a new hobby can help divert your thoughts.

  • Reach out for Support

It’s always good to have someone to confide in. Don’t be afraid of reaching out to people for help and support when you feel like your traumatic experience is coming back to hinder your progress. Trusted family, friends, counselors, or spiritual advisers can always be counted on. You don’t have to revisit your trauma generally; you can discuss your current thoughts and feelings without divulging into the past, which can bring hurt. Finding people and or support groups for people with common experiences w is beneficial as well. They can inspire your journey towards healing and vice versa. Remember that you are not alone; some people love you and want to see you thrive in life.

  • Offer Help

Life after surviving trauma is not always easy. But there are many ways you can reclaim power over your life and thoughts. Volunteering is one way to do just that. Helping others can help you gain a sense of fulfillment that you may have been craving. Don’t let your past hold you back from living to your true potential. Recognize your strengths with the help of others and by helping others.

 

What are the stages of Trauma Recovery?

Road to recovery should be viewed as a process, which consists of different stages. These stages include regaining balance and stability, coming face to face with the memories of the traumatic experience, reconnecting with the world, and post-traumatic growth.

The first stage of trauma recovery requires you to restoring feelings of safety and stability. Individuals who have faced multiple traumatic experiences often struggle to feel comfortable in their skin and relationships with others. Regaining a sense of safety means creating a safe and predictable environment in which one would feel free of physical and mental harm with having achieved some level of emotional stability. This includes the ability to relax your body and mind and the ability to cope with post-traumatic symptoms like flashbacks and nightmares that everyday occurrences might trigger. Instead of reliving the trauma, the focus of this stage should be to enhance life regularly and engage in different activities.

The second stage requires individuals to come to terms with their traumatic experiences and any emotions attached to them. This stage can be painful and overwhelming for many, but you need to untangle the past to move forward. During the second stage, you need to face the traumatic memories, which are painful and overwhelming. It would help if you became aware of them and what triggers them to resurface in your mind. This stage should be completed with the help of a healthcare professional such as psychologists or counselors. These professionals are equipped with the knowledge to guide you through the healing process. Therapies like Eye Movement Desensitization and Reprocessing (EMDR) or Cognitive Behavioral Therapy (CBT) are commonly tried during the second stage of recovery. During this stage, pace yourself to prevent becoming stuck in burying the traumatic memories or flashbacks. This can hinder your progress on the road to recovery. While you may want to get rid of the traumatic memories as soon as possible, it is better to take the slow and steady road during this stage.

The third stage requires you to recreate yourself and your future to form more meaningful relationships with yourself and with others. At this stage, you need to detach yourself from the trauma. It is the point at which the traumatic event(s) are no longer primary. I realized this when a good friend of mine, who was also a nurse would introduce me as her friend Patty who had a liver transplant. One time before a Christmas party at her home, I asked her if she could just introduce me as Patty, her friend. I explained I did not want to be the transplant recipient first. I liked to talk about my transplant to spread awareness of the need for organ donation, but on my own terms. My transplant is an important part of my life story but it no longer controls my life. Your trauma does not define who you are or who you are going to become. Your progress through the first three stages of trauma recovery will be different from the progress of others. The most important part of healing is accepting what you feel. The last stage is the phase of post-traumatic growth. During this stage, you are most likely to change and progress in an empowering manner. You achieve post-traumatic growth when you experience positive psychological changes in the face of your trauma.

After achieving post-traumatic growth, which I refer to as return of health in the book: Resilience, about my journey towards healing and recovery. Like many people, I accept the trauma I experienced because it helped me shape who I am today. Recovery is not about returning to the life you lived before experiencing trauma. It is about viewing life, emotions, and yourself in a new light and moving forward. I shared my journey about suffering from the trauma of long-term illnesses in an effort to help encourage others to begin their healing process.