Day in and day out we hear about the big name illnesses. Those are the life-altering illnesses that receive celebrity endorsements, create foundations, have huge money for research and a community so people don’t feel alone. What about those illnesses that don’t fall in that category. This week I watched “Extreme Makeover: Home Edition” featuring a young girl who has an illness that only 25 people in the world have…can you imagine.
During the show, they brought in another child who had the same diagnosis and the bond was immediate. The relief each of these children felt was palpable. Feeling like you come from another planet does not aid in creating the fighting attitude to conquer the challenges of a life-altering diagnosis. It’s when we can say to someone, “This is how I’m feeling” and they can respond honestly “I know how you feel” that we feel understood.
Maybe one of the best things we can do it when we encounter someone with someone with an orphan illness, simply give them the space to share their experience. This isn’t about solving anything, but giving them the platform to be seen and heard. It’s a great time to give these individuals and families the opportunity to step out of the shadows.
Illness is lonely enough, and as a pilgrim walking this path can be daunting. Fortunately, many people with these diagnoses have doctors that can be their Sherpa on this path. These doctors are often doing research to gain information and in turn create treatment strategies. We all can use a Sherpa to help us on what is often a long and arduous journey. Who’s your Sherpa?
Many of us who are caretakers on this planet are taxed even more when confronting a life-altering illness. For the first time in years, maybe ever, your personal health can concern for self must come first. If you’ve been the one who everyone calls for advice or the person that everyone calls to volunteer for some activity how will that change.
The key is not only self-preservation but participating in your own healing and hopefully a cure. In our age of technology we’re by nature very connected. It’s been a long time since it took weeks to get messages from one person to another. Technology allows us to reach another person in second and no matter where they are located. With mobile technology you’re never far from a phone or e-mail. Latest technology will allow you to access Internet while flying in a plane. How accessible do we need to be?
When walking this world as a pilgrim, caring for your own health and well-being it’s important that you find ways to disconnect. The disconnection from being available is so that you can begin to connect deeper with yourself. It’s important to tune into what makes you feel better. It’s imperative to reduce levels of stress as researchers continuously find that stress aggravates most health conditions.
Don’t give in to temptation and sacrifice yourself for some cause or because it makes you a better friend. You’ll be the best friend or family member in the world by showing by example that we can all be more connected when we make ourselves less available to the outside world and infinitely more available to our internal world.
Most of us only make changes out of necessity. We are great at talking about making changes, especially at the beginning of the year. Unfortunately there isn’t a lot of momentum to implement the change and keeping things status quo are just a lot easier. This is all true unless you’re facing a life-altering diagnosis and then everything changes.
When walking this earth with this type of challenge we begin to ask ourselves questions we never knew were inside us. I’m not only talking about the questions like “what is the meaning of life?” but more questions about our own character an what we’re really made of based on our actions. This is the time to begin looking at how to take this challenge and create opportunities for change that extend beyond your illness.
It’s about extending your life beyond words. This is the time to take the words and listen deep within to see if what you’ve been talking about for years really resonates within or was only hot air. If the words have substance then the next step is to figure out how to bring them to life. How will you give your words the voice in the world it deserves.
When looking to bring our words to life it’s crucial that we believe it’s possible. We need to know that when we make changes we will see results. We need to know that even in the short term the outcome brings us closer to believing we have an internal engine that can achieve great things. It’s not about running from something, but running toward something, you need to decide what that something is and how it will move your personal mission forward.
What would you like to be more personally invested in? What small increments of change can you begin today? It all starts with something small. We need to get the pebble rolling down the hill so it gains momentum before big changes follow.
I was surprised to read that Dorothy Hamill, the famous ice skater, was diagnosed with breast cancer. I wasn’t any more surprised than hearing that one of my neighbors was diagnosed, the difference is the world wide notification of the event. It’s easy to believe that if we’re not a celebrity that we can keep our health secrets to ourselves, but that’s an illusion.
There are obvious things that would tip off our friends and family that something health related was happening. Someone may notice pill bottles in a cabinet. Some treatments will leave the person without hair. Some people may have to use some sort of a device to help with mobility, other signs are a bit more subtle.
What’s not subtle is showing up in your doctor’s office only to find someone in your circle already sitting in the waiting room. That’s exactly what happened to me one afternoon and after the initial sense of awkwardness passed we could both release a sigh of relief because we didn’t have to pretend to each other.
The world is a much smaller place than you can imagine, especially with technology keep us linked together. You don’t have to share your health concerns with anyone, but be aware that you can’t crawl in a hole and be anonymous forever. Most of us don’t have the option of staying in our homes with health professionals coming to us until our health issue is resolved or markedly improved. We will be out in the world and you’ll find others are having similar struggles. Know you’re not alone, and that may be enough to provide a small nudge of support. It will at minimum reduce your feelings of isolation.
When you have troubling news to share who do you call? How do people know that you’re in need? This past week I learned that the son of a colleague had been murdered and I received word from numerous people. What surprised me the most is the emphasis everyone put on the fact that my colleague is a very private person and we should all respect that about her.
It made me think about what do people know about our lives. I didn’t even know she had children much less three children and all adults. I never would have thought to ask her about her kids because in my presence she never referenced them. It’s amazing what we keep under wraps and aren’t even conscious of the omission.
There’s another type of privacy that boggles my mind. A few years ago my uncle was diagnosed with melanoma. After the initial surgery when the whole family called to lend our support we were provided a dictum not to contact him. He didn’t want to deal with all of us and yet knowing my family as I do we’re the furthest thing from intrusive. I was insulted at the time because I know the impact that isolation can have on your mental and physical well-being. Working with individuals and families facing a life-altering illness for the past twenty years I know that people come in all temperments, but if you don’t include people how do you rally the troops when you will need them.
I’m not saying that you have to form a friends and family committee for every medical decision or treatment. I am requesting that you keep people in your life informed by whatever means you feel comfortable. I know clients who have set up websites or blogs to keep people in the loop. Everyone is grateful for the opportunity to be in-the-know without having to be intrusive. Others have put a message on their answering service with an update so the family doesn’t have to answer the phone (especially in this age of caller ID) and people are still in the loop.
It’s much harder to rally the troops if the troops have left for another camp. Don’t leave yourself out in the cold…keep people involved in your life because there will come a day when we’ll need them.
Having a feeling of control over your life is often a key factor in making it through a life-altering illness. What you need to remember is that the only control you really have is over your beliefs, your decisions and your actions…that’s it. This came to light this past weekend when I received a call that the son of a friend of mine was murdered while working outside the United States. He was a young man with many years of life ahead of him and he was robbed of that opportunity.
The notion of control is a true tug-o-war. When kids are young parents have control over their actions. As they grow and become adolescents their job in this world on a developmental level is to separate from the family. As they become young adults we sit back and pray that they make the right decisions but you’re usually helpless in rectifying the wrong decisions. Over time the hope is that each person develops a good decision making process leading to nurturing and loving actions. That’s the extent of the hope we have, is to be able to pray for the well-being of ourselves and others.
Keep your eye on the prize and that’s you’re own well-being. Make sure that you are making decisions that are in your best interest regarding sleep, nutrition, stress, diet, emotional state and spiritual state. These are the areas you have direct influence over and not taking advantage of these results in neglect of the soul.
I’ve been attending a Wisdom Circle for the past nine months. The group meets monthly and along with great speakers we check-in and share on topics related to weaving spirituality throughout our lives. I invited a friend of mine to join us for this month’s gathering figuring she’d enjoy not only the experience, but meeting the group of people I find to be friendly, engaging and thought provoking.
We drove together to the meeting and on the way she stated, “If you hadn’t picked me up, I probably wouldn’t have gone by myself.” I was surprised and asked if that was the case even if we would meet at the location and she responded yes. She was surprised that I had been willing to attend these meetings without knowing anyone in the group and assumed that I am an extrovert. Actually, I’m a big time introvert but there are certain choices I believe I have to make in my life to nurture my soul.
I explained that I’d rather go and find “my people” and that trumps any discomfort I may experience. Finding your tribe is crucial to having a full and enriched life. It’s important as pilgrims that we find our people because a pilgrimage is a long and arduous journey and without the support of like minded people we often abandon our mission. When facing a life-altering illness joining a support or enrolling in a program that allows you to journey with others facing illness (www.lifeisapilgrimage.com) makes the discomfort of joining something melt away. You become energized and you recommit to your health and well-being.
It brings you face-t0-face with trying to cure and heal your body, mind and spirit. The next time you are presented with an opportunity that will move you forward in your journey, even though it’s difficult, choose the one that surrounds you with community. Any discomfort or misgivings you may have will vanish once you show up and allow others to bear witness to your life.
When we think of safety in the home we usually refer to things like radon or fire hazard. Today a study was revealed that young girls who live in homes where there is ongoing stress go through puberty at an earlier age. The study reported girls as young as seven years old entering puberty. The explanation goes back to our earliest times when our body responded to things for survival. When a woman’s life may have bee threatened the body kicked in earlier so that she could mature and propagate the species.
Today things are quite different and we aren’t looking at survival of a species when considering puberty. What the study points out is that stress can have an enormous impact on the body. If it can accelerate the clock for puberty what do you think is happening inside your body if you’ve been diagnosed with a life-altering illness. If hormones are targeted by the stress what is the stress encouraging your body to do that you don’t want it to?
In pre-historic times the average person couldn’t stop the woolly mammoth, but you have control over the stress level in your home. If relationships are strained then what will you do to ease the tension? If financial concerns are the dark cloud over the home where will you seek advice or what community programs are available to help you through this time of need?
There are enough challenges your body is confronting when dealing with the illness…why give the illness one more advantage in the wellness arena? I know you can’t eliminate stress, but minimizing it could be as important as the next pharmaceutical to hit the shelves in saving your life…the choice is yours!
You make decisions every day but have you ever stopped to consider how you make your decisions? Everyone has a process they go through when making decisions and it doesn’t change when you have a life-altering diagnosis. If anything your process becomes more pronounced because you rely on it greater than in the past.
There are those who make decisions from their head. These individuals collect information/data and then through a meticulous process distill it down to its most digestible form and arrive at a decision. The birth of the Internet has helped many utilize this method of making decisions by providing more access to information. This has aided many in making decisions about treatment and end-of-life care with great results.
On the other hand there are many who can read the information and extract the necessary material but when it comes down to making the decision they use their intuition. Everyone has the capacity to get quiet and ask your inner voice for guidance. What most don’t consider is how quiet you have to become in order to hear the whisper giving you direction. Our society is so full of noise that waiting to hear the whisper of guidance can be a painstaking process if it means slowing down and clearing the clutter to allow the guidance a safe place to land.
You’d be surprised that even when utilizing information, it’s your inner guidance that provides the final decision making power. There is no-one that knows you better than you. I’ve known many people who have chosen their treatment modality based on a feeling. That feeling is your life experience and wisdom kicking in to help in the decision making process.
Surprise yourself the next time you need to make an important decision…get quiet, ask the question and wait for the answer. It may be hunch, it may be a gut reaction or the answer may appear in a dream. There are so many opportunities to utilize your intuition so take advantage of this powerful inner guidance.