Today I’m feeling gratitude for water, the source of life that composes sixty percent of my body. Life can only survive in a very narrow range of temperature, and water is essential to sustaining that temperature range inside each one of us and within the world around us. In fact, every biochemical reaction that occurs within us is dependent upon water. Because of my disease—dysautonomia—I need intravenous fluid to maintain my hydration. On the one day a week that the needle I get this water through is taken out and changed, I can quickly feel how my body loses its blood supply to all my organs, as I grow dizzy and my heart works harder. After I get a new needle put into my body so that water can once again flow through me, I feel life…or hope rushing back to each cell within. Hope because standing seemed like an insurmountable challenge in my weakened state, but given water it becomes an obtainable feat. I may get my water in a different way than others, but being forced to become nourished through IV fluids only emphasizes a truth of life a bit more for me: we are all dependent upon water.
A normal person can go three days without water before dehydration becomes an emergency, but for me it is mere hours before my body’s organs are no longer functioning properly. This different existence from so many others makes me look at people playing sports, or even simply walking on a hot day, with a sort of awe someone does when they witness the miracle of birth for the first time. Rationally, you know people have babies, but actually seeing it gives you a sense of awe in how life begets new life. There is something undoubtably miraculous about the whole process. This is the same feeling I get when seeing a body utilize its water to perform a sport under the duress of hot weather. To witness the small miracles that the body performs to play a sport under the hot sun will often brings tears to my eyes.
Today, I am especially grateful for the water I receive through intravenous hydration now that there is a shortage of IV bags is the USA. This shortage is due to disruption of production that occurred due to Puerto Rico’s hurricane aftermath. Having too much or too little water in a place or a body can cause massive imbalances that impact life in direct and indirect ways. When climate change causes our earth to have more severe weather events, the imbalances in water causes changes to some lives immediately––changes like the ones I see when I don’t get my IV fluid and life, suddenly, becomes very fragile as each heart beat becomes a massive feat to manage. Other changes due to water imbalance will be less pronounced and remain mostly invisible until the crisis is at one’s front door. This is how a normal person dehydrates. Their body can compensate much longer with less fluid––to the point people don’t realize they are becoming dehydrated—that is until it’s an emergency. This is the type of emergency the disruption to the production of IV fluid is creating. I am still getting my fluid. There is no real emergency at this point, but if Puerto Rico does not stabilize soon, it will be an emergency that eventually reaches me and many others. It shows me how interconnected all of life is. Once again, my eyes start to water a little at how each life or life function affects other lives in ways we don’t fully realize until that life or byproduct of one’s life is put into jeopardy. It reminds me that I am grateful that I have the fluid in my body right now to cry tears of awe at life and the miracles that each life performs just by being here.
It only takes a second to switch over to Amazon Smile when you shop, but it makes a big difference to us. Our #SeasonOfSmiles is here because every time we go into a hospital to do art therapy with patients struggling with serious medical conditions, donations from amazon smile help us to provide art supplies and card stock that patients use to create cards that go to other sick patients. In the circle of caring that Bridges to Patient Empowerment creates, patients use their art therapy to support others in a similar situation. That way patients don’t have to go through their worst moments in life alone. With them during their toughest moments is a card full of support from someone else who has been in a hospital bed. As patients share their stories, insights, and hopes with one another through art and inspiring words, they hold each other in the palm of their hand with each medical challenge they face, making the journey of illness a little easier. Please support our charity while you shop using link smile.amazon.com/ch/46-3858114
I have been diagnosed fibromyalgia, panic disorder, insomnia and quite a few other conditions for five years now. I have experienced a lot and have struggled to find the help I need to make it through my day-to-day routine, much less when life throws me curveballs. I have tried and put into place all manner of methods of managing my conditions. I have changed diet, put in a modified exercise regiment and adjusted my life to fit my condition. I also take prescribed opioids.
News outlets have been reporting on the “opioid crisis” that has arisen. They talk about the real effects on people’s lives. They talk about the families being torn apart with the misuse of the drug. They are representing every side of the issue. Except mine.
I, like many others with chronic illness, rely on the use of these drugs to lead a somewhat regular life. Understandably, we do not represent all responsible opioid use. However, we do regularly get added to the group of people who abuse opioids. The news loves to report the numbers of total users or the max number of prescribed people in U.S. Using these numbers, all kinds of data can be thrown around as to the approximate number of abusers. I am not ignoring the rising numbers of opioid-related deaths. I fear that too many people are caught up in the panic and it is hurting the people who need the help.
I have recently changed pharmacies due to the national response. CVS has come out to say they will not prescribe more than a week’s worth of an opioid to cut down on the number of pills in the public. This hurts in several ways. I now have more co-pays to look forward to paying. I now have the stress of going to the pharmacy once a week instead of once a month. I get to be faced with the pharmacy techs who judge me on my condition. They have to evaluate what I take, how many I take and how often I take it to ensure I am doing everything correctly. It can feel humiliating and debilitating.
It can also lead to them to refusing to fill a medication. When I was first being diagnosed, I had a tech tell me I couldn’t have any more medication, even though I was taking them as prescribed. I have also been through the panic of not being able to see the doctor in time or canceling my appointment so I end up running out before I can get the help I need.
It is so tight now. My new doctor has a new form I had to fill out saying I have to bring all my meds into the office each visit and be subjected to random pill count checks. To quote a friend, “This is victim shaming.” We are not getting the prescribed medications from a drug dealer. We are getting these medications from a licensed doctor who has examined, poked, prodded and run tests to find out what can help. We are not using these pills for recreational use. We are using them so we can get out of bed and live a somewhat normal life and have a job.
This is a crisis. My crisis. My own personal war inside me. I have to fight to get help. I have to fight to get time to go to the doctor each time. Taking off work to go see a doctor takes a lot of time and most jobs are not forgiving. I have to look at what I have and ration. I have several medications that are “as needed.” Do I take them now when I am having a rough day or do I save them in case I have a worse day? Why do I have to choose? Who is speaking for me? For us? I am only one small voice on a small platform. I am speaking up. Don’t forget us in the crisis.
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There is a Buddhist story in the book of Udana that tells us about a man’s journey to embrace the darkness in life. He states that “guarded and protected, I dwelt fearful, anxious, trembling, and afraid. But now, Sir, as as I resort to forest dwelling, to the roots of trees, to lonely spots, though alone, I am fearless, assured, confident, and unafraid. I live at ease, unstilted, lightsome” (Wilson, 1995, p. 555). It’s a story that reminds us that our fears can be the most terrifying part of our existence. The more sheltered we are in life, the more we fear pain and discomfort, but once we embrace our pain, we often become enriched for it. When faced with ever-increasing mass violence, natural disasters, and a rapidly changing world, we have to ponder how we become like the man in the woods who is enriched by his pain? How do we prevent becoming consumed by our pain and even grow from our suffering?
After I became ill, my worst fear was that I would never be the same again, and that was exactly what happened. Encephalomyelitis––a virus that entered my spine and brain, triggered a disease that may otherwise have laid dormant for the duration of my life. It is hard to describe what it is like to go from normal dreams and aspirations to unrecoverable darkness so quickly. From being a relatively normal kid that was excited to have a major part in a school play to a kid whose legs stopped working and collapsed when it was time to enter stage left. The high fevers, vomiting, and being unable to stay awake could have been a really a bad sickness, leaving a chance to recover someday…but then organs started to shut down and hope of any kind of normalcy occurring again died. No longer protected by the health so many take for granted, a metaphorical “woods” of constant illness opened.
With massive disasters of all types occurring within our world at an alarming rate, we as a society are being forced to face our greatest fears as a collective. The fears that we won’t have a stable environment to live in. The fear that the order we have carved out for centuries is rapidly crumbling before our eyes, and the fear that the world leaders that we thought could give us solutions, in truth, just have band-aids for problems that need stitches. As the Dalai Lama points out we are facing “grave problems of overpopulation, dwindling natural resources, and an environmental crisis that threatens the very foundation of our existence on this planet” (Steward, 2009, loc. 240). The chronically ill can play a role in this transition. We can help people in a world facing this sort of catastrophic change by teaching how to determine the truth of a situation before forging a new path or identity, and how to have all the different parts of self and people around us united on a path out of the darkness. Doing this is essential to finding enough stable ground to grow from pain.
Each global disaster we face weakens our world a little more. With crises hitting at an ever more rapid pace, the world is becoming chronically ill. Events that a healthy planet would have be able to bounce back from become horrific in an already weakened state. When the delicate homeostasis that maintains health of an ecosystem is thrown off, imbalances that would be a minor set back in a healthy organism become major problems. When I was healthy, I could get a cold and recover within a few days, but after I became chronically ill, a cold could become a catastrophic moment. The chronically ill face these kinds of moments more often than most. Hence we have become experts on how to transform pain, fear, crisis, and massive change to something meaningful because when we lose our fight to survive, the illness leaves us broken and dying rather than thriving.
There is a Buddhist sayings within the Dhammapada (as cited in Shapiro, 2017, p.47) that states those “who are just, speak the truth, and take responsibility for themselves, the world holds dear.” For the world to begin its healing journey, we need to unite with an accurate picture of what has happened to get us to this place. Most chronically ill understand that this process can be challenging, take a lot of time, and leave one confused. We call it the diagnosis period where our care team tries to fit the broken pieces of our lives into a story that makes sense to all involved. To make this process go more smoothly, this is what the chronically ill have learned: during this time, focus on the facts and not on opinions, esp. opinions that have an agenda to push. Facts will lead to the truth of a situation. Opinions are always at risk of simply defending the reality one wants to be true. In other words, to get to real answers, we can’t disregard the facts we don’t want to hear.
There is a Biblical passage in Matthew 12.25 that states, “every Kingdom divided against itself is laid waste” (Wilson, 1995, p.188). This passage speaks on the wisdom of coming from a united front when forging any path into one’s future as either an individual or a society. By acting as a “team” the idea is that medical professionals from different backgrounds, beliefs, and medical opinions come together, hear all the facts, and then decide on a plan. An unsuccessful medical team results when people refuse to start with the same set of facts because they don’t accommodate one’s belief system.
Muhammad––the founder of Islam–– told his followers that we are “to one another like a building whose parts support one another” (Wilson, 1995, p.189). Within the body, each cell’s health affects the health of the organ, and each organ’s health affects the functioning of all the other organs. When each part of the body is strong, it can’t be blown away in the storms of life. This is also true when people work together to solve problems. To not be alone and broken, we must unite in a way where each member of the team plays a role in the solution, just as every organ plays a role in sustaining life. When we do this, we achieve a sort of harmony in life and within our interactions together.
Individuals that live in a balanced way create a harmonious society, and a healthy society supports a better world. In this way, to transform our suffering into growth, we must live like the Taoist that “honors balance above all” (Harvey, 1997, p.17). The Mahavagga (a Buddhist text cited in Eliade, 1967, p.573) states that the Buddha proclaimed “birth is suffering; illness is suffering; death is suffering.” Buddhists believe that to release oneself from suffering and create balance, one must take the middle path that avoids the extremes of life; in other words, balance lays between extremes. This does not mean that there is no debate or differences amongst people that come together to form solutions, or that there isn’t, at times, conflict within yourself about what path to take, but this discussion should lead to a “middle way.” A way that incorporates all the extremes of self or others into a united way that incorporates our differences into our unity.
The Unification Church’s Sun Myung Moon text states that “beauty arises from the fusion of extremes into a harmonious oneness” (Wilson, 1995, p.116). When we absorb ourselves too much into one kind of energy, we risk a weakened, disordered state. It would be like a human trying to live on just water year round. This same principle applies to societal differences in religion, nationalities and our belief systems. It is the place we find within the fusion of extremes that brings about the most beauty in the self and within the world around us.
In my own personal journey, I ran across many different belief systems about which healing modalities were good and which were bad. The truth was much less simple. I found that, usually, it wasn’t about healing methods being effective or ineffective, but about when and what what circumstances I could implement a healing modality so that it did work effectively. For instance, while getting nutrition degree, I saw students that wanted to label herbs as the only “good medicine” while western medicine was just “profit driven and full of side effects.” This just was not the complete truth. Instead there is a middle way where there is a place for both. In my care, I would not use herbs to treat a bacterial infection due to a high risk of going septic, but I do use herbs to prevent bacterial infections so common in my disease. The phenomena of trying to quickly label something as good or bad without understanding it happens in religion, spirituality, and different political or national beliefs. Rather than coming up with easy generalizations that diminish the truth of something, we must strive to see differences as unique stones that compose a single path towards a common goal.
In terms of healthcare goals, the chronically ill often remind their different care team members that we all want the same goal when differences of opinions on how to move forward start to become the focus of care. In global matters, we, as citizens, must remind our leaders of the common goals when differences become the focus. Society can learn from the chronically ill that health lies in the balance between all the different forces that it is composed of, and that the way there can incorporate many different belief systems as long as we start from a place of having the shared goal. Chronic Illness teaches that when the body suffers, every other aspect of life suffers as well. In our interconnected state, we will only be strong when the environment that supports us is strong. As we find balance within ourselves as individuals, within society, and within the world at large, let us work to incorporate the wisdom of the ages and all the leaders of the different sectors of life to chart a path forward. As the chronically ill have learned, this is how you survive a weakened state and find one’s way back to balance.
Harvey, A. (2000). The essential mystics: the souls journey into truth.
San Francisco: Harper San Francisco.
Eliade, M. (1967). Essential sacred writings from around the world. New York: Harper & Row.
Wilson, A. (1995). World scripture: a comparative anthology of sacred texts. St. Paul, MN: Paragon House.
Shapiro, R. M. (2017). The world wisdom bible: a new testament for a global spirituality. Nashville: Turner Publishing Company.
Steward, L. (2009). World Scriptures Volume Two: Guidelines for a Unity and Diversity Global Civilization. Bloomington, Indiana: AuthorHouse.
It is getting to be the time of year when viruses spread faster than good cheer. When you have a chronic illness, a virus can easily land you in the hospital for months or worse… while the relatively healthy are able to roam about, spreading their infection everywhere they go. If the relatively healthy won’t stay home when they are sick, the health compromised need to take extra precautions to protect themselves like the thieves of the plague era did. Thieves, during this time, used a combination of herbs that they wore to protect themselves while robing people that might have the plague. This inspired an essential oil that combines Clove, lemon, cinnamon, eucalyptus, and rosemary to ward off germs. They work in the following ways:
Clove has antibacterial and antiviral properties, as well as causing an anti-inflammatory response inside your body. It will help clear your sinuses and that…
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