Unlike yesterday, today is bright, sunny but still a bit cool. No I’m not going to give you a daily weather report, but it is relevant to what I want to share with you today. Aside from having an auto-immune disease for over thirty years, I developed asthma as an adult. It’s one of those things I don’t think about until I begin wheezing and need to grab my inhaler to regain my breath. I have what’s called “exercise induced asthma” which I find amusing since I don’t exercise. The reality is that my breathing troubles are triggered when I begin some type of strenuous activity (yes I understand that strenuous is individually defined).
As I mentioned yesterday it was snowing here in Denver in the morning. I was leaving the house and decided to give the driveway a quick shovel. It only took about ten minutes, but as the time went on my chest got tighter. By the time I finished I was short of breath and I went in the house to get my inhaler. I sat at the top of the stairs, sat down and took a puff. By the time I get my inhaler in these instances my anxiety level is pretty high. I often believe that my anxiety about not breathing is worse than not breathing (I guess that’s up for debate).
Once I regained my composure I had to make a conscious decision about how I would spend my day. I could hang on to the anxiety or I can let it go. As with many who have a chronic illness, anxiety is huge. The idea that in one moment you can be fine and like the weather in twenty minutes things can change keeps you on the edge of your psychic seat. There is an anticipatory angst about how will the symptoms show up to day, if at all, and how will you respond? It’s easy to sit in the anxiety and become paralyzed from participating in your own life. So what’s the plan?
I’ll share with you my thoughts and then I hope you’ll share with me some of yours. I’ve come to understand my body and its triggers. I know the cycle of my anticipatory angst and can talk myself down from the ledge. I obviously need constant reminders that my lungs don’t function like others and I probably need some more work accepting and taking precautions in this arena. It is something I am committed to working on because the moments of gasping for air are far from fun and certainly don’t make for the start of a great day. I have to surrender to the idea that I have certain limitations. Yesterday it was about taking precautions before shoveling the driveway. As I approach the warm weather I need to keep in mind that the same thing happens when I mow the lawn. Being able to generalize my triggers is a big step. I hope you’re looking at not only the specifics of your triggers, but how they generalize to other activities or situations.
This is the time when you have to begin a love affair with your physical body. You have to court your body as if you’re beginning a dating ritual. You need to inquire about likes and dislikes. You may be saying, “Greg, I know my body and I know the triggers”. I would beg to differ because if you did would you really intentionally provoke your body? We do provoke our bodies and I know that to live a higher quality of life I need to befriend my body, not challenge it.
How will you spend your day? Will you stay stuck in the anxiety of the symptoms and limitations? How can you transform the current episode into a fact finding mission so you can make better decisions next time around? What would your day be like if you didn’t feel stuck or trapped?
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?
Welcome to Caregiver Friday!!
I speak a lot about the trials and tribulations of being the caregiver/wellness partner to someone you love. I focus a lot on how to keep yourself sane during these period in your life and how to come out the other side with your sanity and a sense of self. I’ve tried to offer solace for those of you giving of yourself without question in hopes of making the life of another easier and more fulfilled. If nothing else I’ve tried to emphasize the importance of letting the other person know they are loved.
It is with a heavy heart that I share with you the death of my father-in-law. Following open heart surgery twenty years ago he had a massive stroke in the recovery room. If he hadn’t been in the hospital he wouldn’t have lived, but technology saved his life. He would often question how beneficial it was to have survived the stroke because the life he was living was compromised. Eventually after ten years of being cared for by his devoted wife the family made the choice to place him in a care facility. For the past ten years his welfare, well-being and care were of constant concern.
Two weeks ago he was placed in the hospital for skin infections that couldn’t be tamed. Unbeknownst to us, he had a massive heart attack and over the next five days his body deteriorated and he died on Monday. So what does this have to do with Caregiver Friday? I would hope it would be obvious. His family have been holding him near and dear to their hearts for twenty years. Every day was spent considering what was in his best interest. His care took up tremendous space in everyone’s heart and head.
With his death that leaves a lot of space that has opened up in the family’s psyche. Of course the grief process will consume some of that space. Whether or not the family had daily meetings about his care, his comfort and health were always a concern. Just because you don’t talk about something doesn’t mean it doesn’t weigh heavy on your soul. Caregivers should win Olympic Gold Medals for weight lifting since they hold the world on their shoulders; only Atlas could have accomplished such a task.
The family has shouldered this resp0nsibility for twenty years with dignity and compassion. They are the survivors and now that space has opened up in their hearts and their heads you have to wonder how will they fill the space? What will fill in the space previously devoted to caring for the man who was a husband, father, grandfather, brother (youngest of 17 children), athlete, carpenter, musician and man with many opinions.
My hats off to him for raising a great family, instilling great values and creating a family that knows, understands and exhibits the true meaning of family. Conrad, you’ll be missed!
Ever wonder if you owned a newspaper what you would call it? If you’re facing a health challenge you may call it “The Daily Fear”. I’m not talking about the overall fear that people experience when facing a chronic or life-threatening illness; I’m talking about the pervasive fear that is prominent the moment you wake in the morning. The fear grips you at your core because the possibility that something happened in the middle of the night is a possibility.
The “big” question for those of you facing a health challenge is, “Has there been any change since yesterday?” We don’t ask that question wondering if things have changed for the better, but has there been any deterioration since the day before. I’ve spoken with many who upon opening their eyes begin moving a daily routine of moving their bodies to make sure they still have mobility. Some ask another to listen to them recite something hoping their memory is just as strong as the day before. The rituals are numerous but all have the same goal, taking a physical inventory and comparing to the status at the end of the previous day.
I’m wondering if it’s possible to detect the day-to-day changes. Think of raising a child, the parents don’t often see the growth because they see the child every day. It’s only after the child is seen by someone they haven’t seen in a while that the growth spurt is punctuated. Is it possible on a daily basis to do a self-assessment of your status? That’s one of the reasons that having a regular schedule to see your doctor is so important. The doctor will be able to detect the subtle or incremental changes.
What happens when you complete the daily inventory? Are you cognizant enough of your own body to recognize the change? What do you do if you do notice a change? The real daily fear is not about the change that occurs, but the impact that the change will have on all aspects of your life. Each person has a tipping point where they ask themselves, “Is it worth the fight?” Will the daily fear of change impact your quality of life? What will it prevent you from doing if you notice a change?
The daily fear is about worry and the truth is that worry doesn’t change anything. What does change things is a positive attitude, good nutrition, sufficient rest, laughter, love, good social relationships and a host of other factors that ignite your immune system. Instead of looking for the subtle negative changes, consider how your actions today will keep the changes at bay. What are you willing to do today that will limit or eliminate the changes in your physical being? Think about what you can do for your physical body today that will strengthen it.
There is no way to predict what or when changes will occur in your body. For most, fear is not a motivating factor but an inhibiting one and you have enough inhibiting factors in your life…do you really need one more? Consider starting your day with a daily fear-buster. What do you have in your health arsenal that will strengthen the body, mind and spirit. Give yourself every opportunity to ward off the negative and instill the day with hope.
More and more I find myself saying things out loud that I know you’re thinking to yourself. In fact I know it’s the things most people are thinking quietly to themselves in the confusion, possibly despair of an illness diagnosis. The thought today is, “Can’t I just forget that I’m sick for 1 day”. The truth is you can forget everyday, but it won’t serve you. You don’t ever have to acknowledge that you have a health challenge, but then it’s kind of hard for the doctors to get involved and engage you in treatment. When I hear that question I know you’re not looking to have every cell in your body disengage from the healing process, but I am hearing that you’d love to develop amnesia for a short period of time.
When I worked with clients who were HIV+ I would hear the doctors discuss the patient take a drug holiday. This was usually at the point that the treatment stopped working and they were changing medication plans. During that time the patient could fantasize that they weren’t facing a health challenge, but the truth is how can it ever be a far away thought. The body will keep trying to remind you.
It’s kind of funny because those of us who support those facing a health challenge are often waiting for you to get that whack in the head setting you in motion to tackle the health challenge. On the other hand, many develop amensia by a whack to the head and your hope is that you’ll forget about the health challenge. Do you see the irony in all of this? You would think that amnesia would provide a safe haven for your emotions because you don’t have to feel what you don’t remember. The problem is that how can you heal what you can’t feel?
There is a difference between acknowledging your health challenge and dwelling on it. There is no manual that requires your 24hour devotion to remembering and languishing in the shadow of the diagnosis. The diagnosis is there, and for those who have a chronic illness it’s a new relationship, one that most likely won’t ever go away so finding a way to co-habitate is the goal.
Amnesia would be nice but when you returned you probably wouldn’t remember anything during that lapse in memory…can you really live with that? Wouldn’t you rather make a conscious choice to live today to the best of your ability and create a memory you’d never want to leave behind? There are ways to alter your state of consciousness such as meditation and yoga. These altered states allow you to drift to distanct
The alarm clock goes off and if you’re like me you try and figure out how many times you can hit the snooze button before you actually need to get out of bed. There are many things that people do the moment they wake up; some pray, some write down the dreams they had throughout the night and some face the day and the reality of their health challenge. No matter what we do; escaping the reality of the illness, unless we’re in denial, is virtually impossible.
This is the thing that those who don’t have a health challenge don’t understand, every day starts with a reminder of compromised health. This is one of those life experiences that gets lost in translation. It’s difficult for those not health challenge to understand what the big deal is about taking medication every day. Obviously it’s not a challenge they’ve experienced and it’s a judgment that creates a chasm between those who are healthy and those with a health challenge.
It’s not just a physical experience; it’s an emotional and spiritual experience. The idea that the physical body has betrayed you in some way can be disconcerting. The truth is that it wasn’ t intentional. Your body didn’t declare war on you as a means of punishing you…it just happens. The question is “Just because the physical body has a challenge, does your emotional and spiritual being need to be challenged?” This is a huge question because splitting the physical experience of the illness from the other aspects of the self can instill hope.
I don’t want to deny the fact that there will be a learning curve adjusting to new daily regimens. How will you create a helpful perspective about the daily reminder of your health challenge? Can you reframe it as empowering yourself to aid in your own health and healing? It provides you with a sense of control over your own life. You get to decide how you’ll experience the challenge and if you’re being active in the healing process you’ll be turning up the volume on your healing process.
You have a choice to make every time you open your eyes in the morning. You can either wake up and say to yourself, “I’ve got another day of battle”, or you can wake up and say to yourself, “I have one more day to work toward my own wellness and see what new treatments are coming down the pipeline”. This isn’t about freezing yourself till the day when the medical community comes up with a cure; it’s about creating a safe space for you to acknowledge the daily reminder and move on and find a way to have as many positive experiences as possible. It may take some practice, but hang in there…you’ll get it!
Mirror, Mirror on the wall…who’s the fairest of them all? Remember that from Snow White? It’s funny (in an odd way, not a ha-ha way) that before being diagnosed with a health challenge I’d wager that virtually no one stands in front of the mirror and asks, “Mirror, Mirror on the wall…who’s the healthiest of them all? When we have our health we assume that it’s because we’re supposed to be healthy. The moment the doctor shatters that illusion the mirror cracks and we find that there is another person in the kingdom who is the healthiest.
There is no face of illness. Many who have a health challenge walk in this world anonymously. Of course there are those who have visible symptoms resulting in use of devices to assist in walking or breathing; loss of hair; tremors in limbs, etc. When the body presents the symptoms to the world it’s like outing the individual, making them the face of illness. Unfortunately, the rest of the world isn’t familiar with illness and backs away or gawks at the person and interestingly the public begins to create their own stories in their head. They create stories about how the person got sick, what the body is doing to the person or casting their own prognosis based on the physical symptoms.
Interestingly most “big” illnesses (those we speak about frequently), like cancer, parkinsons, multiple sclerosis, etc. have spokes persons. They become the face of that particular illness. It’s always the person who has survived or is living well because their face becomes synonymous with hope. I want to people to realize that the face of illness is not simply the celebrities, but the postal clerk, the judge in town, the car salesman and every other walk of life. There is no typical health challenged person.
The face of illness is yours, the individual who is facing a health challenge. You are the vehicle that spreads hope about health and healing. It’s your story that will have staying power because those in your life are emotionally connected to you. The celebrity is a story you tell at dinner, but your story is the one that comes up in frequent conversations because those in your circle have access to someone who can answer their questions about the illness. I know it’s not what you wanted, but you are the expert about your particular health challenge.
We would like to think that certain people whether it be ethnic, socio-economic, or other subset of the population are face of illness. Unfortunately that is the case with certain hereditary illnesses like Sickle Cell Anemia impacting the African American Community or Tay Sachs, impacting the Eastern European Jewish community. But the illnesses we hear the most about are equal opportunists.
How do you feel being the face of illness? What has your health challenge given you permission to talk about that you may have been hesitant to discuss before?
Welcome to Caregiver Friday!!!
In the Middle Ages the Kings built moats around their castles to protect the palace. They would come up with inventive methods to protect themselves from invaders. The Kings were conscious of the fact that others wanted to do them harm and they continuously found ways to create space between those wanting to inflict pain and the safety of their kingdom. As we move through history we can see modern day manifestations of this same idea. Following September 11th they closed Pennsylvania Avenue running past the White House to motor vehicles. These measures are for physical safety, and although they are meant to instill confidence in personal emotional or spiritual safety that’s usually an illusion.
Safety and security are paramount to the goal of every caregiver I’ve ever met. Creating a strong exterior provides the front most caregivers need to continue providing care to someone who is trying to survive a health challenge. For many, that wall of safety keeps things in order for a long time. You’re able to justify all behaviors and thoughts because it’s for the greater good. The problem is that for many caregivers, there comes a day when there is a crack in the security wall and in that moment you realize your level of fragility and that’s scarier than any symptom or treatment you’ve helped your love one get through.
Before that crack becomes visible it’s easy to take a stand and be on a soap box about your role, but once the crack is visible the person you have to confront is yourself. It’s the moment when you realize how scared and helpless you feel. For many that moment is when the doctors tell you that death is imminent. It’s the moment when you give yourself the permission and freedom to take a deep breath, and it’s on the exhale that reality hits. The energy you’ve put on keeping your focus on the patient suddenly is transformed to a more personal level and that’s a place many caregivers have avoided out of necessity for a very long time.
It’s like what happens when a rock hits the windshield of your car and creates a small crack. Left unattended that crack will begin to spread and eventually look like a spider web, far reaching and causing lots of interference. It’s the loss of focus that makes the walls come tumbling down. It’s in that very moment that loss of focused energy leaves you floundering and trying with your might to reassemble that place of order, but it’s impossible. At some point you have to surrender and for caregivers the idea of surrender is like speaking a foreign language. You’ve been so strong and so determined without waivering and all of a sudden you’re faced with a reality that isn’t manageable, controllable or even comprehensible.
What was that moment for you? How did you handle going from caregiver to the person who needed support and attention from others? Was there a moment when you just let it go and being in the moment experienced the process differently than you could have ever imagined?
Everyone is scared when the phone rings in the middle of the night because the news is rarely good. Unfortunately those types of calls can come any time during the day. We got a call at 5:30pm yesterday that my father-in-law, who has been fighting an infection in the hospital, had a major heart attack. To make matters worse the hospital doctor reported that his kidneys are failing and that will lead to multiple organ failure. The recommendation was to get to California as soon as possible.
The call came early enough in the evening so that there were still options for a flight. The Internet makes these kinds of searches easy decreasing the frenzy just a bit. We had an hour to make a reservation, pack and get to the airport. These call no matter how expected are always a surprise. No matter how anticipated the shock of impeding death is mind boggling. The obvious is the loss of a family member, and now that so many of us don’t live near our families we’re forced to jump into action immediately. My sister-in-law is still trying to get a flight from Chicago to CA.
If you’ve been annointed the family communications director you’re also responsible for keeping up with the doctors, nurses and other hospital personnel. The trick is to find some way to still deal with your own relationship to your loved one, not an easy task. Then comes the dilemma of whether to leave the hospital or stay; for that rely on the hospital staff and make sure they have all your contact numbers in case there is a turn for the worse. Always rely on your gut instincts. I know most of us are not medical professionals, but if you have a sense following that instinct.
Rally support! Make sure someone is given the task of calling the people who are in the status of need-to-know. This morning I’ll call some people to let them know about what’s happening because those who support us can only do so if they know we need them. Don’t worry about keeping up a good front, be authentic. If you need time to breathe and let out a few tears, take the time and give yourself that space. It will make the rest of the responsibilities more manageable. Your human and you need to remember that when the phone rings with bad news you will react as a human, full of emotion, confusion, and enough adrenaline to kill an elephant.
Be kind to yourself and let others help and I hope you never have to be the one to “get the call”.
I’ve started reading the works of Thomas Merton, Trappist monk , writer and peace and civil rights activist. I finished “The Seven Storey Mountain” and now I’m reading “The Intimate Merton”. Why am I reading these spiritual works? I’m fascinated at the conversations we’ve been having about the mind and the body. If you read the works of St. Teresa of Avila and St. John of the Cross you begin to see themes that have continued to be asked over time.
I got two pages into the book and read the following quote; “Merton became a monk by writing about becoming a monk”. I read that and stopped what I was doing, put the book down and began considering the huge implications of that statement. After I read that phrase I began thinking about the process of “becoming”. How do we get from point A to point B in our physical, emotional and spiritual lives? I know that making cause and effect connections creates a calm within and I treasure that feeling.
My next step in the process was to begin the process of generalization. If Merton felt that he became a monk by writing about becoming a monk, what can you do or become by writing about it. If you began writing about your fears could you have them dissolve? If you wrote about health and wellness can you slow down or reverse illness? If you write about becoming less encumbered can you live a stress free life? Writing about the particular is one thing. Staying with the process long enough to see results is where the rubber meets the road. We live in a world that thrives and demands instant gratification. Last week I wrote a post about emotional and spiritual dialysis. I invited a client to engage in this process. After two days she e-mailed me to say I’m not detoxed yet from the negative feelings. I was amazed and amused to think that anyone can or would be willing to believe that two written entries will eradicate years of negative energy flowing through their veins.
What would happen if at the top of the page you wrote the same question every day? Do you have the perseverance and the courage to stick with one question long enough to get to the “real stuff”? Are you willing to go an inch wide and a mile deep? Do you have desire to rid yourself of the questions and concerns that keep you bogged down? If the goal is health and wellness, can you hang out in the question and truly explore what lies beneath?