Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Long or Short Fuse?

Over the past couple of days I’ve noticed that the patience seems to be the topic of the week.  As we approach the midnight hour signaling the beginning of 2009 it’s not unusual for people to reflect on the past year and make their famous “resolutions”.  I know many parents ask for patience with their children.  Employees hope that their bosses will develop patience.  How many people you know, who are diagnosed with a chronic or life-threatening illness, are asking for patience?

The idea of patience for those facing health challenges crossed my path as I began reading about the life of St. Teresa of Avila, translated by Mirabai Starr.  Teresa of Avila (prior to sainthood) was a young nun at the monastery when she was helping care for a nun who had an abdominal obstruction.  What she took away from the experience was the amazing patience the ailing nun had developed while coping with intense pain.  Teresa of Avila shares that she asked, in prayer, for an illness that would help her attain that ultimate level of patience.  Teresa of Avila did develop a terrible illness and fought valiantly to overcome her health issues.

I’m not saying that any of you would ever hope, wish or pray for an illness to learn patience.  I’m torn between totally understanding it and thinking it’s the wildest and craziest thing I’ve ever heard.  I guess the real question is that once the health challenge is present what will you walk away learning about yourself?  What qualities will your develop and nurture that you didn’t realize were a part of your being and how will that reflect on your daily life and your relationships?

I’m focusing on patience here, but it could be any particular aspect of your character.  You get to decide what is surfacing for you.  What’s working you?  What’s that thing that keeps popping up and trying to get your attention?  What will it take for you to give “it” your attention?  Why are you keeping “it” at arms length?  The truth isn’t something to be afraid of, it’s a part of you and “it” wants you to experience the intimacy.

We all have lots of lessons to learn in life and the hope is that by increasing our wellness quotient, we’ll have plenty of time to make that happen.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Is the Crazy Over?

The holidays are over and people are still out at the stores getting the last of the great bargains.  It always feels that once we pass December 26th there is a universal sigh of relief that’s almost audible.  In case you’re one of those heading to the stores for the bargains, the scoop is that the big sales will be around till January 5th if not later.

I hope you had a wonderful holiday.  Yes the presents are great, but I’m hoping you had time to connect with family and friends who care about you.  In many cases, what do you get for the person who really doesn’t need anything?  I think spending time together is a great gift.  The truth is that spending quality of time together is better for you than the new tie or umbrella you may have received.  A visit with loving family and friends sparks your immune system.  It releases hormones in the body that soothe the body.  Who knows you may even laugh and if you’ve ever read Norman Cousins, you’ll know that laughter is a great remedy for pain.

It’s easy to get caught up in the holiday frenzy.  When facing a health challenge you may even put yourself in the frenzy to prove something to yourself, but it’s over and hopefully there is no price to pay for the over exertion from the marathon of holiday shopping.  Take some time to simply regroup.  Think about what these specific holidays have meant to you and write it down, put an album together, create an art piece or scrapbook.  Having a comforting memory is a great way to reduce tension and bring the body back to center.

What did you do to get through the holidays?  Let’s see if we can create a huge list that can be utilized for all future holiday seasons!

Posted in after the diagnosis, Living with Illness

The Blame Game

It’s Christmas morning, last night was the fourth night of Hanukkah, the Winter Solstice just passed and Kwanza begins tomorrow, talk about a holiday grouping.  I’ve been flipping through the channels on television and there are numerous programs talking about what the holidays mean, how they began, how we celebrate and noting the time of wonder.  Families are waking up this morning to open presents, the traditional Jewish celebration of Christmas was to go to the movies and then Chinese food and the candle industry is riding the tide during a season of lights.

In many faiths this is a time of wonder and miracles.  I’m sure many of you facing chronic and life-threatning illnesses are hoping, wishing even praying for a cure.  It’s difficult to let go of the anger, the blame or the pity that results from being sick.  Many can’t understand why they just can get past the diagnosis and move on to more fruitful endeavors.

If you read stories about the mystics and the Saints you’ll find they weren’t believing all the time.  Many had battles with their God and they still became Saints.  Following a difficult time in Teresa of Avila’s life she’s quoted as saying to God, “If this is how you treat your friends, no wonder you have so few of them!” I share that with you because it’s natural to want to blame someone for the diagnosis.  It’s understandable to want to be able to answer the question “why” or even “why me”, but as of today you may not have any answers.

I know that you may feel picked on, but then why would you want to believe or need to believe that you were singled out by God to be given a heavy load to carry.  Last month I was talking to a friend who has a lot of challenges in her life.  She said, “I hear the phrases like, God doesn’t give you more than you handle, or what doesn’t kill you makes you stronger”.  She then turned to me and said, “If that’s true then I’m mad at God”.

This is one of those times in life when we tend to leave science and move exclusively into our relationship with God.  This is a time in your life when you need more friends than enemies.  This is a time in life when spiritual comfort can mean the difference between soul stamina and soul exhaustion.  This is a time when the belief in the possible far outweighs the belief in victimization.  What if we just walked around with the notion that what happened to us happened and now what am I going to do about it.  Take the pressure off your relationship with the Divine and use that relationship as a pillar of hope.  Miracles do happen.  It’s not time to make something happen; it’s time to welcome something in.

What will you Welcome In this holiday season?

Posted in Uncategorized

Bringing Up the Tough Questions

Welcome to Caregiver Friday!

I read an article yesterday about having those deep discussions about the patient’s desires regarding their medical care.  The items on the checklist include all items on the continuum including end-of-life care.  The suggestion or the point being debated, not sure which it was, was that since families come together for the holidays, this is a good time to have those discussions.  I don’t know about you but I wouldn’t exactly want to say, pass the mashed potatoes and oh by the way would you ever want to be on a respirator.  I do believe there is a time and a place for everything.

I would like to make it clear that I do believe it’s important that the patient have a living will and a durable medical power of attorney.  In most cases, you the caregiver, will the the power of attorney.  It’s for that reason that I do believe that you as the caregiver/wellness partner become assigned the task of making sure these documents get completed.  I know you’re thinking, “sure…one more thing for me to do”.  The truth is that if you have these documents in the long run, should be patient not be able to make their own decisions, it will actually provide you with direction making decision making on the patient’s behalf clear.

I’ve played around with a lot of different methods of approaching these topics with family and friends.  I’m currently the durable power of attorney for medical care for all my family members, my spouse and my best friend.  Instead of bringing up these uncomfortable questions as part of a medical inquisition I am allowing the media to be my point of entry for all discussions.  I watch for news articles, television segments and reported studies so that I can casually bring it up in conversation.  Back when the big news story was the Schiavo case it gave me an opportunity to explore the ideas of withholding food and water.  The questions don’t come out of the blue and the person is engaged in conversation that is stream of consciousness, from the gut.  These answers tend to be how the individual feels without the censors installed instructing him/her on how to make everyone feel less uncomfortable with their illness.

The reason it’s important to have it written down is that if contested in the courts simply stated that you know the person’s wishes won’t suffice.  You can download the forms for your state online and then simply have them notorized.  A copy should be given to the doctor, put in the patient’s chart at the hospital and you, the caregiver/proxy should have a copy.  Everyone does not need an original of the document, copies are fine.

There was a book on leadership and I found a gret quote, “Find people who will tell you the truth and reward them for it.”  Share that quote with the person for whom you’re providing care.  Telling them the truth about the importance of these discussion should be rewarded.  It’s not about you losing hope or believing they’re declining, it’s part of the illness process.  We know that you both have been having these conversations internally from the moment the doctor said, “I’m sorry to tell you…”.    We all have anxiety around our health and when there is a spotlight on it we’re more sensitive.  Bring it out in the open and rid yourself of the high anxiety.  There will most likely be small amounts of anxiety, it comes with the territory.

Save the holiday season for creating warm and loving memories.  Utilize this time for connecting with friends and family.  Allow yourself to experience the joy of the season; it doesn’t have to be related to any specific religion or tradition, but the essence of peace and happiness.  There will be time (in most cases) do take care of the hard questions after the holiday.  It’s not like we’re talking months, but everyone deserves a break from focusing on the illness, think of it as a mini-vacation, just don’t take a vacation from medication and treatment.

I wish you and your family a happy holiday season.  May it be filled with love and laughter.  May you feel connected to others allowing that energy we call love to permeate your soul and fill you up.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness

Tear Jerker

The movie “The Holiday” is one of my most watched movies.  It’s a cute story, but there are lines in the movie that I find charming and revealing about the characters.  We find out, in the movie, over lunch that Cameron Diaz’ character hasn’t shed a tear since she was 15 years old.  On the other hand, we find out that Jude Law’s character is “a weeper”; you know the kind, the one who cries at movies, commercials, greeting cards or if the wind happens to be blowing from a certain direction.  I will share with you that I too am a weeper, I try and contain it to movies and commercials.

Yesterday a client called me because she was frustrated and had been arguing with someone.  She finally took a deep breath and said, “I think I just need to cry”.  You see, crying isn’t simply about sadness or happiness (you know the happy tears), but can be related to a host of emotion.  I know from sitting in rooms with thousands of individuals facing a health challenge that crying is part of the process and may even be part of the healing plan.  When Christina Applegate was on Oprah she stated that she cries every day since her breast cancer diagnosis.

What if we didn’t generalize the tears?  What if the tears were far more significant than simply salty water running down our cheeks and cloud our eyes making them puffy and red?  Tears follow a trail down the face.  They are individual otherwise if all your crying left your eyes at once you’d have a waterfall from your eyes.  Each tear makes its own unique way down the face.  Ever notice that sometimes we just let them fall where they may, and other times we make a point of absorbing them off our face as quickly as possible.

What messages are your tears sending you?  Do you find that you have certain triggers that begin the flow of tears?  Do you feel better or worse after you’ve cried?

How will you honor each and every tear that falls?  Will you allow yourself the safety of shedding tears as a means of ultimate self-expression?  It’s usually a time when we’re extremely vulnerable, but can you achieve that place of vulnerability without the tears?  I’m not sure.  What have your tears meant to you?  When are you most likely to shed your tears, a particular incident, a test result, good news?  It’s important to understand your tears because they are a barometer of your emotional being.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Fear and Panic

I am continuously looking at new ways of looking at the world on a daily basis.  In order for me to understand certain ideas or concepts I use the recipe method.  I take the concept and begin breaking it down into its components.  My hope in doing this is that I get a stronger grasp at what comprises this concept and chunking it down gives me more maneuverability in overcoming the obstacle or challenge.

Yesterday I was listening to Terry Gross on NPR’s “Fresh Air”.  She had a guest, a noted poet, who has had some health problems in recent years.  During their conversation she asked him about his fears regarding diminished physical capacity.  His response was clear…you have to week out the panic from the fear.

I’d never deconstructed fear and never really included panic under fear in the organizational chart of emotions.  The interesting thing is that as soon as he said it a ray of light cut through the cloud in my head providing me with a level of clarity I hadn’t had previously.  The idea that panic is a component of fear was thought provoking.  Let’s face it, whenever someone receives a diagnosis for a chronic or life-threatening illness there will be fear.  I guess the question is does panic need to accompany fear or is it something that compromises our intellectual, emotional and spiritual defense mechanisms?  Is it panic and not the fear that causes moments of irrationality?  Is it panic and not fear that keeps us tied up and chasing our tails?

There is a saying that pain is inevitable but misery is optional.  I’m wondering if we can apply that same thought to our current discussion…fear is inevitable (when diagnosed with illness), but panic is optional.  I know your next question, “how do you curb the panic?”  My first recommendation is to stop and not do anything.  The tendency is to go into overdrive and get caught up in the frenzy of the diagnosis.  Sitting with the news, even for a short period of time will give you time to prioritize your next steps and create a plan.  There are many other ways to week out panic and I’ll discuss that over the next few weeks.

For now, be conscious and try to differentiate between fear and panic.  What are you doing to avoid that state of panic?  Are you able to honor the fear without triggering the panic?  I’d be honored to hear about your journey.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Can Adversity Be Avoided?

Earlier this year I wrote a piece on overcoming adversity that has caught the attention of many.  Obviously the goal, if possible, is to overcome adversity because it gets in the way of progress, success and as I’m told…happiness.  The truth is that there is no way to avoid adversity.  Adversity comes with the package of being a human being, living on this planet at this time.

So what about adversity and it’s impact on those facing illness?  Without question, chronic and life-threatening illness are adversities.  It is one more thing added to the heap that must be confronted because the other options don’t provide favorable outcomes.  As with any other type of challenge overcoming illness adversity requires perspective, perseverance, and support.  It is not a solo venture.  Trying to tackle this “bad boy” on your own will lead to devastating results including physical, emotional and spiritual exhaustion.  You want to avoid this at all costs because the key to overcoming any health related challenges is the need for stamina on all levels.  The mind, body and spirit must develop stamina to make it through these challenging episodes.

I understand that there are plenty of other considerations given our current economy, our worldwide political circumstances and the transition of our President, but somehow we have to walk towards the path of stamina.   If you read or watch the news you know about the Cholera outbreak in Southern Africa.  Cholera spreads as a result of unclean drinking water.  The question in that region is, “Is it possible to not get sick given the current environmental circumstances?”

Living in a western, industrialized culture gives you a leg up in overcoming health related adversity.  The next question is “Are you doing all you can to maximize your healing potential?”  You can take the best medications and have the best doctors but if you aren’t compliant with your treatment or you aren’t getting enough rest and you’re eating poorly how can adversity be overcome?

There has to be a meeting between our interior worlds and our exterior worlds.  When the two meet and create an alliance amazing things can happen.  What are you doing to overcome adversity in your life?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness

What is Healing?

Many people get energized during a debate.  Adrenaline courses through our veins and we become super human in our energy, strength and unfortunately, most of the time, our level of stubbornness.  One of the great debates is the difference between healing and curing.  See I’ve already set a bias in the previous sentence.  I’ve stated that there is a difference between healing and curing, simply implied by the question.

Overall the common consensus is that curing is the eradication of the disease from the body.  Unfortunately we don’t have many illnesses at this time where that claim can be made.  If that’s the case, then what are we striving for?  In many cases we’re striving for healing.  According to Jeanne Achterberg in her audio series “Intentional Healing”, the World Health organization states, “Healing is a rupture in life’s harmony and healing is reweaving that rupture”.

Notice there is no statement of curing in the above statement. It in many ways alludes to a “new normal”.  A place in time when there is a breach in our body’s security system and we’re working feverishly to reinforce and renew what was the weak link.  I like the idea of “reweaving the rupture”.  I feel that is acknowledges the strain, physically, emotionally and spiritually and simultaneously provides hope that we are resilient.  Still no mention of curing in anything I’ve mentioned.

Healing provides each person experiencing a health challenge to recommit to their own lives.  It’s that fork in the road when each person has to be quiet, go deep inside, and ask themselves the tough questions like, “what does it mean to recommit or how might I reweave the structure?”

What have you done to reweave the structure?  I’m looking for suggestions because I only have so many responses to that question.  I’d love to hear your world view on the “reweaving” issue.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness

Education is Good

Most of us went to school for a minimum of twelve years.  Of course, there are some of us whose mothers promised us that if they won the lottery we could go to school for the rest of our lives (that’s a true confession).  The truth is that education is good.  I’m not merely talking about sitting in a classroom listening to someone from the ivory tower espouse theories that sound good on paper but have no social relevance.  I’m not talking about taking tests, reading long lists of books…I’m talking about real life education.  The kind of education that comes from walking in this world every single day.

Whenever you’re getting an education the first thing to consider is, “what do you need to learn”?  For those facing a chronic or life-threatening illness learning how to be an empowered patient should be at the top of your list.  So let’s say you can major in patient empowerment and minor in health advocacy (self-advocacy).  These are two big arenas so your next consideration is “how do you learn how to do this”?  My hope is that your first answer is by reading the posts on this blog.  Of course there are other options like books, magazines, interviews and oh yeah…real life.

It’s important that you ask yourself, “who will be my teachers”?  You need to ask that question so when you come across someone that holds those qualities you hold on for dear life (literally and figuratively) and soak up as many lessons as possible.  We may be talking about teachers, but some may consider these people your heroes.  Some may consider these people to be spiritual directors providing divine intervention.  What they are doesn’t matter.  What you call them doesn’t matter.  What matters is the information they share and you absorb.  What matters are the lessons you learn from being in their presence and watch them in real life.  What matters is that you’re open to learning about a subject you wish you’d never had to understand let alone acknowledge.

Education is changing.  You’re changing!  What have you learned and who have you learned it from?  Share who your greatest teachers have been and why you chose them, or why they chose you to be their student!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Spirituality and Health

The Power of Touch

Years ago the phone company had an ad campaign that said, “reach out and touch someone”.  I always thought that was an interesting way to phrase it since in most cases you’re not in the vicinity of the recipient.  I guess today with social network sites the ad line would read, “reach out and ping someone”.  The truth be told there is nothing more powerful than touch and in person rates supreme.

I don’t know why out culture equates touch with sex (well I do understand but it’s ridiculous).  Let me let you in on a little secret, we transfer energy from one to another when we touch someone.  People in crisis need to be touch.  People facing a health challenge need to ask to be touched.  When I worked for the HIV/AIDS services program we secured funding for a massage therapist for our clients.  Why?  Because they need the experience of touch and not just any touch, but therapeutic touch.

Ever have someone touch you and you notice their hand is warm?  You’re feeling their energy.  Don’t you find it comforting?  When we experience physical connection our blood pressure lowers, our breathing becomes more regulated and the body loosens its grip on itself.  Having someone lay a hand on us, and not in a violent or corrective way, but in a loving and caring manner rejuvenates our self-worth and self-esteem.

Touch is about connection, real honest to goodness connection.  When facing a health challenge can you think of anything more affirming than someone connecting with us on a deep and profound level?   Let’s start a touching craze (appropriate touch of course, don’t want any sexual misconduct claims floating around).   Transfer some of that healing energy, receive some of that healing energy and let’s keep the energy flowing like a healing river.