Pilgrim Pathway/Surviving Strong
Supporting, Educating, and Inspiring Individuals Newly Diagnosed with a Chronic or Life-Threatening Illness
Greetings….
The other day I did a post talking about how Charles Schwab want you to “Own Your Future”. I passed the building today and noticed that the quote is actually “Own Your Tomorrow”.
It doesn’t change the essence of the post. I just wanted to make sure I got it right!
I’m watching Good Morning America and Dolly Parton is the guest. She’s closing the show with a song, how appropriate. The song captures the thought I’ve been thinking a lot about over the past few weeks. The song is titled “Celebrate the Dreamer in You”. What is it about a dream that keeps us going when facing a life disruption?
I just finished the first draft of my doctoral dissertation. It was a study where I interviewed artists facing chronic and life-threatening illness and they all shared one important characteristic. They all had a dream for their life and their art. There was a unanimous devotion to creating work that would continuously inspire and bring beauty to the world while telling their stories.
What interrupts our dreaming process? I’m not talking about the dreams we experience during sleep, but the dreams that create a path to the future? Facing a chronic or life-threatening illness may certainly edit that dream, but isn’t it important to keep dreaming? What is it that moves you forward on your journey to health and healing?
I believe what Dolly Parton was singing about was the importance of holding on to those idea and ideals that bring joy to your life. She gave a commencement speech to a university and was hesitant thinking she wasn’t smart enough, but she’s intelligent, successful, and wise beyond her years. The dream is what educates her because when we dream we look for ways to live those dreams.
What do you need to learn about overcoming a health challenge? Do your dreams include learning about your own body, mind, and spirit connection? How will you incorporate those nuggets of wisdom into your life?
I hope you find ways to celebrate the dreamer in you!
Every morning the alarm clock goes off reminding me it’s time to wake-up. I hit snooze once before getting up and starting my day. I’m one of those people who like to take naps, not possible because work gets in the way, but staying awake is obviously an important aspect of one’s life.
I started thinking about my years in college and all those who tried to stay awake to study and took No-Doz. They fought to stay awake, but really were they were doing was staying up, not awake. Then I began to think about our lives today and how many people are taking No-Doz in life and simply exist, not living.
I guess what I’m really wondering, is there a way to stay conscious, equating to staying awake? Are there times in our lives when we find ourselves dozing, not paying attention and as a result things slip by us unnoticed? I find this happens when I’m knitting, which I use as a spiritual practice, I go on auto-pilot not paying attention and lo and behold I make a mistake. It’s almost as if I need to be like a race horse and put on blinders to stay focused, but don’t know how I would do that with my mind.
Now turning to your health, being “awake” means paying attention to what’s going on with your body, mind, and spirit. Are you aware of how your body is feeling? Are you aware of any changes that you need to notify your medical team about? These are important questions because you take an inventory of the physical body you can head off potential problems if you let them go too far. The same goes for your emotional and spiritual life. If you allow sadness/depression to spiral out-of-control, unchecked you become prone to feeling hopeless impacting your journey to health and healing.
What will you do today to start your “stay awake” efforts? How will you remain conscious through your day? I encourage you to take note of your level of consciousness and see if staying “awake” serves as a catalyst for health and healing.
I remember when I was in grammar school getting a list of vocabulary words on a weekly basis. We’d have to write each word ten times and then write a sentence using that word. I guess they believed what Mr. Sacca told me in my education class in college, “Repetition for Emphasis”. Memorization and utilization were the way to learn these words so that one day we could go take the SAT and do well on the verbal part of the exam. However, those exercises taught us general vocabulary. We’re a culture that doesn’t utilize a lot of emotional words so I’m wondering how extensive is your emotional vocabulary?
When I had a private psychotherapy practice I saw a lot of children. I had one of those posters that had 50 faces with a “feeling” listed beneath the face. Over time you could engage the child by utilizing one of the “feeling” words so we could both understand the true nature of their emotional life. Broadening their emotional vocabulary was a lifesaver. Many of the children in my practice were in foster homes as a result of placements by Children’s Protective Services. Giving these children the capacity to express themselves emotionally opened their world to healing.
So what happened to those of us who didn’t get these lessons as children? How do we come to develop our emotional vocabulary? What prompts us to want or need to learn how to express ourselves emotionally. I’ll venture a guess that the day you were diagnosed with an illness is the day you wish you had a host of ways to express yourself emotionally. When you’re flood with feelings, not having the capacity to get them out is like getting the wind knocked out of you. Your body, mind, and spirit search for the words, but for many there is nothing available.
I believe this is one of the gifts of support groups or workshops for those facing a health challenge. Being with others who can expose you to an emotional vocabulary and model their experience is inspiring and daunting. It gives you a sense of possibility to hit the nail on the head about your emotional life since your diagnosis. It relieves the pressure that builds up from keeping the struggle (if any) with your diagnosis inside. Having the capacity to express yourself emotionally is freeing.
The other advantage to establishing an emotional vocabulary is its impact on your physical health. Releasing the body of difficult emotions lightens the load. The body can direct its attention to building the immune system instead of trying to ward off the stress of stoicism. It replenishes your internal resources and you can never have too much in reserve.
How will you build your emotional vocabulary? Let us know so we can share your creative ideas!
Recently I started going to a new dentist. If you remember, in the last month I wrote a piece called, “The mouth as the gateway to wellness” so I’m following my own advice. I like the dentist not only because she knows what she’s doing, but she’s very clear on her mission for her patients, “helping patients to keep their own teeth for the rest of their lives”. That requires preventive work and fixing problems so they don’t proceed any further. All this takes money. I’ll do another post in the coming weeks on dental insurance but it’s still too raw.
Anyhow, one of the things they use is injectable powdered antibiotics below the gum line. The original estimate had the split where I pay $11 and the insurance pays $45 per tooth. When I went last week the bill was unusually high so I called the next day for an explanation of the charges. The front office person informed me that the insurance isn’t covering any of the antibiotic so the $56 per tooth was all on me. Don’t you think it would have been nice for someone to point this out before they injected me with 6 x $56?
I can tell you that business practices are one of the reasons that I personally have changed doctors and dentists in the past. The front office/business manager is just as much a part of the medical team as the doctor, medical assistants, dental hygenists, etc. I understand that their job is to increase the revenue of the office but not in deceiving ways. I left my las dentist because I didn’t like their business practices.
As a patient, especially someone diagnosed with a chronic or life-altering illness we have to understand that business is part of medicine. The question is how do we keep these medical business managers in line so their practices are in line with the doctor they represent. The mission should be the same for everyone in the office. Full disclosure has to be a part of the process or we as patients begin to wonder what else the medical/dental staff is hiding or not sharing.
What’s the moral of the story? I’m now a much more informed consumer at the dentist. I ask more questions and what they think is important may be for their own bottom line, but it may not change the outcome of my care so why go into debt for something that is a fringe benefit and not a defining moment.
It’s the Monday before Christmas and everyone is rushing like their lives depended on getting the exact gift. You and I know that you can’t go to the store to buy the best gift of the year which is your health. So what is your perfect gift? What will bring you joy this holiday season now that your world view has changed…or has it? It’s a time filled with anxiety and stress, culminating in a few hours of get togethers, ripping open carefully wrapped presents and food, but is that enough?
I just finished the book “prayers from a nonbeliever” by Julia Cameron. It wasn’t the greatest book ever written, but it had a few snippets that caught my attention. The book really followed her every day experiences and the struggles that were self-imposed in her life. She created her own strife and anxiety and now she was writing her way out of it with her own version of “conversations with g-d”. Over time she came to understand on a deeper level that any change, any gift(s) she would receive would be a result of her own belief and faith, and there’s no buying that in any store.
The post on Friday asked, “What’s on your Christmas list?” I’ll ask it again in the context that I put forth above because it can mean the difference between getting caught up in all the trimmings of the holiday and the “shoulds” and “must haves” and experiencing the spirit of the holiday filled with connection, love, and compassion. If you’re not sure about how perspectives shift; it may be a good time to watch Dickens’ “A Christmas Carol”, so you can see that when we reflect on what brought us to this point, any and all paths to health and healing are possible.
Families are funny because they create interesting communication scenarios that complicates life. I had a funny experience with my family this weekend that I want to share and see if you or someone you know has ever experienced something similar.
My parents came for a visit, a long weekend, since we hadn’t seen each other in a while. At one point I’m walking with my dad and he tells me that my mother’s doctor had left a message saying that the blood test she had gone in for came back with results that were elevated. The message also went on to say that my mother needed to go in to speak with the doctor about treatment options (it was a glucose test). My father went on to say that he didn’t want to tell my mother about the test results until their mini-vacation was over so she wouldn’t worry.
A day later my mother, who is technologically challenged, had me look at her cell phone. I noticed she had a small envelope at the top of the screen and told her she had a message. Lo and behold the doctor had left a message about her test results. She didn’t seem scared or anxious at the news, but resolved, like it’s just one more thing. She told me not to tell my dad.
At this point I had to tell each of them that the other knew about the message. What’s the underlying message of the story? Each was trying to protect the other from the news left by the doctor. Like most people my family doesn’t always deal with medical issues that well ( they leave that to me) so a possible diabetes diagnosis was not in the cards. I thought it was sweet that they wanted to protect one another. My dad definitely doesn’t deal with medical issues well, he won’t even take an aspirin when he’s sick, so the idea of treatment of any kind sends him to the stratosphere.
What’s the real essence of the story? We want to believe that we’re protecting others by not sharing news, but that often backfires. You may not think others can handle the news, but you’d be surprised; I certainly was this weekend. When facing a health challenge, or a mental illness the truth is that when we put ourselves in the competent and compassionate care of a good provider the journey is easier. It’s never pleasant, but it does make it easier.
The secret, although well intended, can bind you in uncomfortable communication patterns. Get it out there and free yourself from being bound!
I’ve been thinking a lot about the post from yesterday because it impacted me greatly. The idea that 1 in 6 Americans will be diagnosed with a mental illness is astounding, and I’m a mental health professional. The biggest problem and I’ve seen in it my own family, we don’t talk about problems like depression and bipolar disorder so they stay closeted, but the signs are there and medication is prescribed and still the whispers. This doesn’t even take into account the genetic factor involved with any diagnosis.
The public service announcements outing mental health diagnoses is truly a piece of art. The fact that they didn’t use actors but real people with a diagnosis and their family/friends/support persons shows there is support when we take the illnesses seriously and get the right treatment. It always helps when you have star power behind the message and having Glenn and Jessie Close spearhead this campaign is amazing. I encourage you to go to the website http://www.bringchange2mind.org and not only watch the public service announcement but the side interviews with Ron Howard the director and the “real” people in the public service announcement.
The bigger question and this applies to both physical illness and mental illness is how do we begin the conversations. What if everyone in the world wore a t-shirt with the word(s) that signifies their own personal struggle. There has to be some way to begin leveling the playing field so that conversations can begin and we don’t create a caste system based on how serious one’s diagnosis is, within the grand scheme of things. We’re all “real” people and we have “real” problems. Facing any health challenge whether it be physical or mental health related is serious. We have to improve our filters when it comes to those who whisper behind our backs. Unfortunately, I believe it’s on those of us with a challenge that have to initiate the conversations and that’s never easy.
Start small, you don’t have to do a public service announcements. My personal example begins when I go out to dinner with friends/family. We all sit down and people offer me wine or other alcohol and I refuse. Their next question is often, “Are you in recovery?” That’s my opening, I explain that I have an auto-immune disease and the medication I take metabolizes in my liver and kidney and since I don’t want to add fuel to the fire I take my doctor’s recommendation and I don’t drink. It’s been 17 years…if nothing else all my friends know they always have a designated driver.
How will you start your conversation? I think this public service announcement is the beginning of something beautiful!
We live in a litigious society. When it comes to errors made in medical settings, the stories of the legal battles would blow your mind. The bottom line is no one likes to be lied to and we all know that cover-ups aren’t a hit with most people. The lessons we learned as kids about telling the truth should apply in the medical arena, but risk managers, hospital administrators, and insurance companies are terrified of how it will effect the bottom line.
Yesterday I mentioned that studies show that when medical personnel make an error when the provider told the patient about the error and apologized the number of lawsuits dropped dramatically. The truth is that we all want to be treated with civility. We put our faith in our healthcare providers and if something goes wrong we hope that they could at least show us the courtesy of being honest. In most cases I don’t think the medical personnel would hold back but they are ambushed by those who pull the purse strings and that’s where everything goes haywire.
There are new strategies being tried with incredible results. This past Tuesday, the Wall Street Journal had an article titled, “Hospitals Own Up to Errors”. One example of the changes being made were shared as follows, “The University of Illinois center set up a specialized service in 2004 to help staff communicate with patients and families after harm occurs. Since 2006, the center has had a policy of fully disclosing medical errors, and swiftly offering a financial settlement. And patient-family members sit alongside staff on a board charged with overseeing plans to prevent errors.” That’s a fresh take on this whole situation. There is transparency and as patients it’s what we want and deserve. When our emotions make our decisions things become contentious and that doesn’t reverse the harm that has occurred or change how medical facilities interact with patients.
I feel it’s our right to always ask our providers for the truth. If they are truly the professionals they purport to be it shouldn’t be an issue. If they are more concerned with their reputation and their insurance carrier than we have bigger fish to fry.
Pilgrim Pathway/Surviving Strong 