Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Helplessness…Uncomfortable to the Core

If you’ve read some of my past posts you know that I have a black lab mix named Tashi. She’s thirteen plus and has been fighting MRSA (Methicillin-resistant Staphylococcus aureus) for seven years. The past ten months have been one infection after another. The bacteria are sneaky, mutating every six to eight weeks requiring a new culture and new meds. She’s been so patient! In addition to medication, she gets a laser treatment on her foot every other day. It’s a great experience for her because the treatment is painless and she gets lots of treats from the entire staff at the vet.

So why am I feeling helpless in this moment? This past weekend she developed conjunctivitis. She had a discharge that was making her continually rub her eyes. We took her to the vet and he prescribed medication. Yesterday I woke up and noticed that instead of progress, her eyes looked worse. They were so bad that she could hardly keep her eyes open.

Her regular doctor was off yesterday so she got to meet a new vet (new for her). The doctor was kind and considerate. She knew about Tashi’s history because she’s been teaching the entire staff about MRSA and all the troubles that come with this diagnosis. New meds, eye drops to soothe the itch, and lots of love will hopefully make the difference.

Helpless because I can’t make her feel any better. She can’t rub her eyes so she has to wear a cone (the famous radar dish) so she won’t irritate her eyes. I’m putting ointments and drops in her eyes every couple of hours. I feel helpless because in trying to make her feel better I have to do everything in my power to prevent her from irritating her eyes even further. I feel helpless because being so vigilant with the MRSA that a different infection leaves me feeling defeated.

I feel helpless because I can’t explain what’s going on to her, and all she can do is trust that I’m going to help. Helplessness is very uncomfortable. A different kind of uncomfortable than the itch and pain she’s experiencing because it’s my soul is uncomfortable. This type of experience teaches me that I can only do what’s humanly possible.   I can only be compassionate and proactive about her medical condition, but I don’t have the power to heal her. Uncomfortable because it shows that I have limitations and surrender is my only option.

Our story continues. She’s a happy girl, although uncomfortable in this moment. She’s full of love. She holds spaces of trust and love in her heart (so maybe I’m projecting a bit). We’re a team! There isn’t anything I wouldn’t do to ease her pain and discomfort. There isn’t anything I would do that would jeopardize her quality of life. There is only one thing I do have power over, ensuring that she leaves it all on the table, living a life that’s full of love, fun, and connection.

Diagnosed with a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Exploring how Art impacts Healing?  Visit http://www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness

Behind Closed Doors

We have two lives, the one we show to the world and the one behind closed doors. If we’re lucky the two really mirror each other. Unfortunately, there are plenty who have one persona in the world and another behind closed doors. We project qualities and characteristics based on what we see from the outside, but how do we get in? What allows us to see behind the front doors we pass?

I remember an episode of Oprah where she interviewed women who were socio-economically well off, lived in big homes with expensive cars, designer clothes and plenty of credit cards, but behind closed doors were the victims of domestic violence. Their stories were chilling because they described the amount of energy it took to keep up their public face. It’s a balancing act between fear, saving face, and desperation. The secrets and the pain that accompany a life with uncertainty and limited possibility is small.

There are too many people who walk this world with stories of loneliness that go untold. This sense of isolation impacts them physically, emotionally, and spiritually. Support groups give the individual a place to feel in community. A place where the loneliness is minimized and a common language is spoken. It’s not a language that can be learned; it’s a language that needs to be experienced.

We have been conditioned to keep our spirits up and limit the amount of hardship we show the world. We may hide our challenge for fear that those around us won’t be able to hold the pain. Having a safe container for the pain frees us and allows us to live our lives in alignment. How will you create a unified life? Who will you invite into your world diminishing your isolation? How truthful will you be about what you’re experiencing?

Isolation and loneliness are not diagnostic categories. The health communities lump these circumstances as part of other diagnoses such as depression. I believe that they are just as detrimental as recognized diagnoses because the hidden nature of loneliness and isolation is difficult to uncover.

Have you been diagnosed with a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to explore how Art impacts Healing?  Visit http://www.timetolivecreatively.com

Posted in coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness, newly diagnosed illness

Shifting Away From Anger

Anger is our most accessible emotion. We can go from zero to sixty in a matter of seconds. The problem with anger is that it doesn’t resolve the issue. It’s a manifestation of what we have been taught releases the pressure, but in fact it creates bigger issues for us.

I don’t often share this about myself, but anger was definitely one of my go-to emotions. I’m not sure if it was indignation or self-righteousness, but either way it didn’t serve me well. Fortunately I had the good sense to spend many years in therapy. It helped me understand that I had deeper feelings that I hadn’t explored. That sent me on an inner pilgrimage, a spiritual journey, allowing for personal transformation.

I want to be clear; I’m not talking about anger as a manifestation of a mental illness. After this past weekends shootings in Santa Barbara, we can see the shooter’s anger, but also his underlying pathology. I’m talking about the anger that comes as a result of disappointment, reaction to victimizations, or some other traumatic experience. I’m talking about the anger that accompanies a diagnosis of a chronic or life-threatening illness when we go on a “why me” rampage. I’ve heard so many people express their anger at God when receiving a diagnosis, but what is it they’re really feeling?

It took me a long time to change my modus operandi. After someone I love was wronged (at least in my opinion) I had to find a way to shake the anger. I started to look at what the “offender” did and what made me mad. She used her perceived power to hurt others, personally and professionally. The shift came when I looked beyond the immediate action and started to examine what could be motivation to intentionally inflict pain on others.

My practice has been to shift away from anger to sadness (in many cases). Sadness is experienced internally whereas anger is an external manifestation of our emotions. What happens when we sit with sadness? I find that I become calmer. I become more contemplative. I become more sensitive to other emotions I’m feeling and those of others. It makes me more present, as opposed to anger that transports many of us to some other place emotionally and spiritually.

I want to be clear; I’m not saying that anger is never appropriate. I am saying that we should be experiencing anger when warranted, but in other instances we should be looking to free ourselves from the chains of anger to a more expressive and honest emotion.

Facing adversity such as a health challenge can lead to anger in response to the powerlessness that comes with the diagnosis. The reality is that we are confronted with a reality where our assumptions have been shattered. We “assume” that we’ll all live long and healthy lives, but we also know deep in our hearts that’s not true. Anger seems like a quick and justifiable response if we haven’t had this type of challenge before. Until we come to a place of acceptance, anger seems to bring a sense of resolution. However, for many, it’s just the beginning of the journey.

How can you shift away from anger? Perhaps you seek out a support group, a therapist, a coach, or a spiritual advisor. You may choose to engage in some type of ultimate self-expression like process art to connect with your emotional and spiritual self. However you access those feelings or choose to take the journey deep within, you’ll feel a sense of relief when you shift away from anger.

Looking for education, support, and inspiration when facing a chronic or life-threatening illness? Visit www.survivingstrong.com

Interested in Art and Healing? Visit www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness, overcoming adversity, Personal Conviction

“The Normal Heart” A Relevant Message in Today’s Age

This weekend I watched the television adaptation of Larry Kramer’s The Normal Heart. The movie, based on Kramer’s play by the same name, chronicles the beginning of the HIV/AIDS crisis. This may seem like an entry on Facebook for Throw Back Thursday, but its message is current, and beautifully acted.

One may wonder why are we engaged and lauding the courage it takes to make a film about HIV/AIDS in the 80’s when we’re in 2014. I worked as a HIV/AIDS service provider in the 90’s. Things have changed enormously since then, that I’m grateful for, but there’s still more work to do, just as there is with cancer, multiple sclerosis, Parkinson’s disease, and mental illness. Using that as a jumping off point, why is The Normal Heart so important?

I was listening to an interview on Good Morning America with Julia Roberts. Roberts plays a physician who, at the beginning of the epidemic, is really the only doctor seeing these men with this mysterious illness and trying to get funding to unravel its mysteries.

One of the most poignant moments in the interview Roberts shared how the movie is relevant in today’s age. Roberts clearly talked about the need for us all to be willing to fight for a cause. We need to be able to go to the mat for something important, vital to our existence when it comes to our physical, emotional, or spiritual lives. The Normal Heart shows us the lengths necessary to bring about change. It provides us with the catalyst to ask ourselves what do we think needs to happen to make lives better for those facing challenges. What’s our part in the making those changes, and what are our next steps?

What draws at your heartstrings? One of the easiest ways is by looking at your Facebook account and seeing what you’ve “liked”. What organizations, stories, and posts bring about a visceral reaction? I have a friend who’s an HIV/AIDS nurse practitioner. She has devoted her entire life to finding a cure, lessening the impact of HIV on people’s lives across the planet. I follow the Old Friends Senior Dog Sanctuary.  They care for older dogs who have been abandoned or whose owners can’t care for them (mainly older adults). They post pictures of the dogs throughout their day capturing the hearts of folks like me (I have a 13-1/2 year old lab mix with many medical problems). There’s something we’re all drawn to and gets us going when we talk about it, most likely those causes we give money to or volunteer for, and for some the professions they’ve chosen.

The Normal Heart may reflect on days gone by, but its message it relevant today. If nothing else just the length of time it took to have the film made talks about how perseverance and passion fuels change. What do you use when facing a challenge to channel your energy for change?

Diagnosed with a chronic or life-threatening illness? Looking for education, support, and inspiration? Visit www.survivingstrong.com

Interested in the impact of Art on Healing? Visit www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Empowerment, Life Motivation, living with chronic illness, Living with Illness, overcoming adversity

What Star Trek and the Wild Wild West Have in Common

“Space…The final frontier”, those immortal words at the start of each episode of Star Trek. The show had some very progressive themes given the decade it was aired. Looking back and reflecting one of the most memorable episodes, aside from the Tribbles, was “The Empath”. Perhaps that episode sticks with me given the profession I chose, but it truly set the stage for many conversations in years to come.

Star Trek was set in the future, but what about the past? When we (in the United States) landed on the shores of America, there was plenty of land to explore. The frontiersman would go west exploring and hoping to create a life with plenty of opportunity. Like space, those traveling west didn’t believe in boundaries. The only thing in the foreground of the experience was possibility.

Most of us don’t know our own frontiers. We fall into lives of routine and safety. It isn’t until we’re faced with a challenge like the diagnosis of a chronic or life-threatening illness that we look to see what’s beyond our self-imposed boundaries. I think about the group of women with breast cancer or breast cancer survivors who climb mountains, awaiting the magic of reaching the summit. I’m not suggesting that you climb a mountain, but what frontiers have you yet to explore?

Perhaps there’s something you’d like to study that requires you go back to school, a new frontier. What if you feel like you have a book within you but you haven’t put the first word down on paper, a new frontier. The amazing thing about our frontiers is that they are infinite.

I worked in Buffalo, NY for six months and was amazed at how many of the folks I encountered were born and raised in Buffalo. I was having a conversation with a woman who had returned from visiting her oldest son who was stationed in Clarksville, Tennessee. She shared that she had another son, a high school senior, and she made him a deal regarding college. She told him he could apply to any college he wanted but it couldn’t be in Buffalo (there are plenty of colleges in Buffalo). Her reasoning was that she wanted her son to know that there was a world out there beyond Buffalo’s city limits. If after school he wanted to return to Buffalo to work and raise a family that was fine. She was determined to push his boundaries and invoke the frontier mentality!

Facing adversity, such as the diagnosis of an illness, shouldn’t just be about survival. It should be about body, mind, and spirit expansion. It’s the opportunity to live on the edge (not between life and death, although for some that might be the case) literally and figuratively. Our only boundaries are the ones we set usually out of fear (read the post “Fear In All Its Glory”). Don’t let fear get in the way of what’s possible! Explore your frontiers!

Diagnosed with a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Interested in how Art aids in physical, emotional, and spiritual healing?  Visit http://www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness

Fear In All Its Glory

Fear is an interesting topic because it takes on so many faces while displaying itself in a multitude of ways. Gavin de Becker wrote a book The Gift of Fear. It’s not the fear that will impede your life, but what the fear prevents you from doing. It’s the aftermath of the fear that is like a storm and when you’re in its path destruction is possible.

When I first read de Becker’s book I was enthralled. The first edition was written in 1996. We didn’t know at the time that 9/11 would happen. We had just experienced the Oklahoma City bombing of the federal building so as a nation we were on high alert. De Becker makes it clear that the benefit of fear is not being on the defensive, but developing an intimate relationship with your intuition. Connecting with those feelings or thoughts that would, in the past, go unnoticed or overlooked.

The problem is when our fears become irrational. The times when we generalize our fear and take a defensive position as we move through life. Penache Desai, author of Discover Your Soul Signature asks, “Why do we hold onto and even hoard our fear?” When you read that does it ring true for you? Has generalized anxiety disorders become pervasive in our culture because we hoard our fear?

When diagnosed with a chronic or life-threatening illness fear is a natural response. We don’t like to discuss frailty, and certainly avoid any and all discussions about death and dying. I’m going to personify fear for a moment. Fear does exactly what it wants us to do, become paralyzed. It impacts our good judgment. It impedes our ability to think clearly. Unfortunately, when we face any type of adversity is when we need to be our sharpest, so how will you achieve that state-of-mind?

In Dan Harris’ book 10% Happier, he discusses his enormous struggle with fear. In fact, he talks openly about the panic attack he had on the air during a broadcast. His journey to took him down the road of using drugs until he realized that if he was going to succeed he had to do something differently. His odyssey took him throughout the self-help and faith communities. He concluded that meditation was the one thing that worked for him and so many others. Through meditation he could face the fear. Like Susan Jeffers book, Feel the Fear and Do It Anyway.

Stop hoarding your irrational fear while honing your intuition to identify when real fear exists. When facing a health challenge, identifying what you’re actually afraid of is important. Is it the prognosis? Is it the journey through treatment? Could it be the possibility of dying? Wrap your head around the fear and address it. Find someone to help you identify and work through the fear. Engage in a practice that will alleviate the fear. Utilize your creative energies to express yourself without judgment in a genuine and authentic way.

Don’t be the victim of fear, be its master!

Diagnosed with a chronic or life-threatening illness and looking for education, support, and inspiration?  Check out http://www.survivingstrong.com

Want to use your creative energize for healing?  Visit http://www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, living with chronic illness, Living with Illness

What I Continue To Learn From My Dog About Living With Illness

I have a black lab mix, adopted from the shelter at 9 weeks old. Her name is Tashi, from Alice Walker’s book The Color Purple.   We’ve shared many amazing times together and continue to do so even though she’s slowing down a bit at the age of thirteen. About seven years ago she contracted MRSA (Methicillin-resistant Staphylococcus aureus), a staph infection that is often drug resistant. In the past, we would tame the infection and get at least a few months of remission. Currently, we’ve been fighting a never-ending infection that keeps mutating eluding our efforts for remission.

I can tell you about the long list of doctors and tests she had endured, but I want to focus on the appointment we had yesterday. It was time for a new culture because the antibiotic we’ve been giving her the past six weeks stopped working. The progress stalled and that just means without further intervention we would start moving backwards.

The doctor came into the examination room and we had our usual conversation about treatment possibilities and then he took Tashi to the back to secure the culture. The culture entails giving her lidocaine (a numbing agent) to minimize her discomfort. The doctor then takes samples the size of a pencil eraser from her foot. He then closes the puncture site with sutures that she’ll have in for the next three weeks.

When the doctor walked her out to the lobby he told me when to expect the results. He then said, “This is the best she’s ever done, I guess we become accustomed to things that we never thought we’d have to endure.” It was an odd thing to hear, but I got it; she’s a trooper.

Every time we got to the vet I’m amazed that she doesn’t fight me upon entering the building. The staff adores her and gives her love. The doctor, the perpetrator of what some might call medical intrusion, adores her and treats her with the utmost respect. She has an innate understanding that even though these people inflict pain, no one is out to harm her in any way. Her level of trust and “go with the flow” mentality seems to diminish the trauma and pain of the procedures she so effortlessly endures.

Healing environments have to be built on a foundation of trust. Trust that the medical team is on your side and that anything they’re doing is to help, not hurt. They need to find ways to provide a level of comfort because procedures can be painful and are often scary. Tashi is always surrounded by a loving energy that seems to shield her from the trauma of the procedure.

Tashi is a role model for what it takes to keep on going with a potentially life-threatening illness. She is able to endure procedures, endless rounds of medications causing side effects like loss of hearing and yet she’s loving, playful, and trusting. Trust is something so crucial on the health and healing journey and I continue to learn how it manifests by watching what Tashi endures on a daily basis. She’s my teacher.

Diagnosed with a chronic or life-threatening illness? Looking for support, education, and inspiration? Visit www.survivingstrong.com

Interested in Art and Healing? Visit www.timetolivecreatively.com