It’s a Monday morning and I woke up to see snow on the ground. Last night’s weather report had said that we’d have some moisture between midnight and 4am, but it was still snowing at 6:30am. As I sit here and write this post it’s still snowing. So why am I giving you the meteorology report for the state of Colorado? Because the weather is an inconvenience. It’s annoying because it means the roads will be slippery, the people driving on the road will be a bit more stupid than usual and when the wind blows the snow gets in my face; it’s wet and cold.
Those facing a chronic illness are continuously in the midst of their own surprise snow. It’s those small inconveniences that happen to those of us facing a chronic illness every day that can feel like a continuous uphill battle. It gets in the way of the plans you may have for any given day. It may put a cramp in your style, and depending on the level of inconvenience may need to create a change in plans.
Just like the snow maybe you’ll have to be a bit more careful how you walk up and down the stairs or how you get in or out of the car. It’s possible that you may have to change your schedule giving yourself more time to engage in any particular activity. You may feel warmer or colder depending on how your personal thermostat is working on any given day and the side effects of your medication. These are just a few of the inconveniences those facing a chronic illness have to endure. The trouble with this idea is that we’re not talking about a cold that we get over in 7-10 days; it’s a lot more complicated and involved.
We have to become masters at flexibility. We have to have the patience of the Saints. We have to have the endurance to make it not only through this particular inconvenience, but all those to come. We have to commit to a treatment plan that may outlast many of your relationships/marriages. It’s a complex issue, but those of us facing a chronic illness, after a bit of time, understand that this is the “new” normal. We have been drafted to serve the body in a way we never could have imagined and my hope is that we serve with honor.
How will you serve today? Will you allow the inconveniences destroy your mood or the joy you may have the opportunity to experience? How will you cope with your snow?
I remember the first time I saw the pictures of the earth taken from outer space, what a magical vision. For a planet that seemed so large the picture made it look so small; I guess that’s a lesson in perspective. As we stand on this planet, in our bodies the illness experience knocks us off our pedestal of feeling big and cuts us down to size. It’s not a punishment, or a lesson in reality, but an understanding of our place in the world.
The question “what’s the size of your world?” is important because it’s not uncommon following an illness diagnosis for our worlds to shrink and the unfortunately it’s repopulated with a medical community we had no interest in knowing. Maybe our world has to increase it’s size like a taffy pull, just keep tugging at the edges and stretching it till it becomes smoothe and shiny. This would happen by friends, neighbors and co-workers engaging you. Maybe we can increase the size of our worlds the way they do with angioplasty…insert a balloon into the artery and then slowly fill the balloon with air increasing it’s size allowing for increased blood flow. Perhaps we can increase the size of our worlds by invitation, making specific requests of people.
It’s interesting that President Obama asked the country to engage in acts of service. Can you think of any greater act of service than maintaining our relationships to their full capacity? Service is not only something we do for those we don’t know. Service is about extending a hand to anyone who could use a bit more support and encouragement.
How will you increase the size of your world? Make a list of five things you can do and then select one that you can do today. I’d love to hear what you’ve chosen and the actions you’ve taken to increase the size of your world.
Ever stand at the ocean’s shore and look out on the horizon? What do you see? I’m a beach baby and love the water, specifically the ocean, and what I was always amazed about was the vast openness. The never ending water reaching out to where sky meets sea. It’s that feeling that things will never end that those facing a chronic illness every day. There is a constant reminder that the illness is ever present and most likely will be for the rest of our lives. As someone who has faced an auto-immune disease for over thirty years I’m well aware of the impact the point with end has on one’s psyche.
Flannery O’Connor wrote, ” I have never been anywhere but sick…In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there is no company, where nobody can follow.” I’d like to add, and hope no one ever wants or has to follow in those footsteps. O’Connor dealt with lupus throughout her life and understood, quite eloquently, the impact physically and spiritually that a long road toward wellness can have on one’s inner journey.
It can take a long time to accept and embrace the “new normal” we have to live when our lives will always contain an element of medical treatment. Many can’t understand the experience of having a host of doctors on your Christmas card list, but they become an integral part of the lives for those facing chronic illness. It would be great to be able to take a vacation from chronic illness, but unfortunately, it goes on and on so it’s up to us to be able to take mental and emotional vacations.
I’ve found that one of the great ways of taking a frequent vacation from illness is by creating art. It gives me time to enter “the zone” and in that space all outside distractions disappear like fog when it’s touched by sunlight. The creative juices flow and it overrides the ick/discomfort/annoyance felt toward the illness or transforms what could become the “pity pot” to something beautiful and resourceful.
I’d love to hear how you are taking a vacation from your chronic illness…even if it’s just for a moment.
Time is all we have. Once the diagnosis begins there is often a race against time. The first is getting all the appointments in so we can find out the diagnosis, treatment plan and the endless specialists we’re going to have to see. Depending on your illness the race may be against time. It’s not something we ever want to discuss but not everyone who gets sick will live so what is it about today that’s going to be different from every other day.
Before I entered the helping professions I began my adult work life in the hotel industry. The general manager explained to me that the selling of a room in a hotel is a perishable commodity. That meant if we didn’t sell room 101 on April 11, 2008, we couldn’t ever sell it for that night again. Don’t you feel the same is true with the lives we lead?
Once we live this day we can’t say, “Oops I didn’t do it right, may I have a do over?” That kind of thinking only works in the movie Ground Hog’s Day. It’s interesting because most people wouldn’t want the chance to live their days over so how can we make the most of what we have today. Trust me, I understand that lying in bed in pain may not be a day to go out dancing, but what can you do to make the most of the day?
Is there a poem that brings you joy? I have found the work by poet Mary Oliver to be thoughtful, endearing and full of meaning about life. Maybe you have a piece of music that helps ease the tension or pain. If you’ve read The Mozart Effect you’ll find that music has amazing healing powers and it doesn’t take any effort to listen (unless you have migraines and the thought of sound is worse than torture).
How we live the day is our choice. Yes, we will often have to make concessions, but it’s part of the creative nature of those battling an illness. Today is a perishable commodity and the shelf life ends at midnight. What will you do before the day expires?
Following a diagnosis many facing a life-altering illness turn their life, their health and their happiness over to their medical providers. If they prescribe the right medication, then I’ll be happy. If they can limit symptomatology, then I’ll be happy. Is our happiness really dependent on their actions? If we weren’t happy before are the choices our medical team make going to release happiness into our bloodstream?
One of the people I admire is Caroline Myss, www.myss.com. Listening to her radio broadcast on Hay House Radio, www.hayhouseradio.com, I heard Caroline make some wonderful statements about how we make decisions. I just took those ideas and thought about how they apply to health. She stated, “Life is not an entertainment system. Choices are not made for you…Do something that puts a new energy in motion-stop being passive.”
When we are facing our illness, everything is a decision. Whether I take my medication today or not is a decision. Whether I seek the support of an acupunturist to relieve symptoms is a decision. Whether I search the web for the latest research about my illness is a decision. I can give you a checklist, but it’s your to-do list, not mine.
Making decisions is empowering, even if the end result is not what we expected. We get to chart our own course for happiness so what three things can you do in the next 30 days that will bring you happiness?
Genetics labs all over the world are constantly on the lookout for what genetic factors cause illness. This week the story is the genetic link tied to smoking and lung cancer. The article says, “A smoker who inherits these genetic variations from both parents has an 80 percent greater chance of lung cancer than a smoker without the variants, the researchers reported.” (http://abcnews.go.com/print?id=4579691)
As a psychotherapist the jokes are always about what did your parents do to you that someday will land you on the analyst’s couch. Now in addition to our parents causing emotional damage, they can be responsible for our physical demise as well. If that doesn’t land you on the analyst’s couch nothing will. As someone who has lived with an autoimmune disease for over thirty years I’m well aware of living life as a genetic dumping ground. Does it serve me to blame those who passed down the illness, only if living with anger and resentment boosts my immune system somehow, I can assure you that’s not the case.
What do you do with the information that your illness may be genetic? As tests become more available we all have the choice and decision about whether we choose to know if we are carrying a genetic variant. If you knew would it change how you live your life? I know women who have had prophylactic mastectomies after finding they had the breast cancer gene.
Is information power? Are you more likely to make life choices that will improve your health if you know the results of the test? Are you more likely to torture yourself and all those in your genetic lineage if you know the illness genetics of your family? As we become more technologically advanced these findings and their fallout will only increase. It may not be relevant in your lifetime but what about your kids? The bottom line is that blame doesn’t serve any of us…so let’s find other ways of coping that will increase our quality of life and diminish the adverse effects of any illness.
Extreme cases call for extreme measures. An interview with a woman with a malignant tumor was first resigned to giving up and then she found there may be an alternative surgery that would save her life. Her tumor was in a place many would believe is inoperable. It was surrounded by six of her internal organs, usually not a prime candidate for surgery. She found a doctor who was willing to think outside the box and it saved her life.
The surgery would remove the organs surrounding the tumor. The tumor would be removed and then all the internal organs would be put back in her body. It sounds X-treme but it was a risk she was willing to take. Without the surgery there didn’t seem to be much hope. The opportunity given to her by the team of doctors, a team of six, is amazing. They were willing to try something that most wouldn’t dream of trying, but they were pushing the boundaries.
There are many times when pushing the boundaries to recapture our health is crucial. It’s not only about finding medical practitioners willing to push the boundaries. As patients, we have to consider stepping out of our own comfort zones and using radical treatments to save our lives. When there aren’t a lot of choices is there really any question about how far we’ll go to regain our health, or the chance at healing?
Keep that in mind if you’re ever confronted with a daunting prognosis. Be willing to take it one more step and you’ll often be surprised what awaits you.