Posted in Caregiving

The Reflecting Pool

Welcome to Caregiver Friday!!

My San Antonio lessons continue and as the days roll by more and more questions pop into my head.  I was standing in front of my apartment complex waiting for the bus and watching the cars as they pass me on their way to their destinations.  I haven’t taken the bus on a regular basis, other than in foreign cities here and abroad, for over 25 years so my vantage point has always been the car.

As the cars were driving by I was wondering if the drivers make up stories about the people at the bus stop, the way I make up stories about the drivers.  We concoct stories based on things like the made, model, and year of the car, the condition of the car, what neighborhood they’re pulling out of and a host of other conditions.  Do people think I’m different because I’m riding the bus instead of driving a car?

So let’s translate this to your life as a caregiver.  What stories do people tell themselves about you.  Maybe it’s the stories based on things in your shopping cart, like first aid/medical supplies, etc.  Perhaps it’s the way you sound on the phone, even if you say everything is okay…people know.  What I do know for a fact is that if people don’t have the whole story they fill in the gaps with made-up stories.  We like the circle to be complete and if we don’t fill in the gaps, the brain takes over and completes the task.

What does your body language, your emotional/spiritual persona saying about you on any given day?  Are you trying to cover the real you because you’re concerned the “real” you would be too much to handle?  I’ve found that the “more real” you are the better you’ll feel and so will those around you.  You’ll find out who in your circle can hold the pain.  People don’t have to solve your problems, but knowing they can hold the pain without running for the hills is a comfort.  It means you have a place to vent and be authentic.

You don’t have to be happy and care-free for others.  Caregiving is strenuous and exhausting.  I hope you’ll find ways to rejuvenate your spirit, but in the mean time, take a look in the mirror whether it be an actual mirror or a quiet reflective space in your soul and ask yourself about the story you’re telling yourself and the story you want or need to tell others…then go do it!

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

Guardian Angels in the Least Likely Places

San Antonio is providing me with lots of experiences and each a storytelling moment.  The magical part about the stories is that they all have lessons that are so universal that I have to share them with you.  I’m not always one who believes that everything happens for a reason, but in the grand scheme of things there are certain chain of events that bring these lessons to light.

I had arranged for a taxi to pick me up three times a week on the nights I work late.  Last night the driver obviously forgot about me so I called the taxi company for a ride.  I got picked up by a nice guy and we started talking about my job and his job and the city’s transit problems given that it’s a service city based on tourism and the buses don’t run late enough.  For many, taking a cab would be cost prohibitive, but he seems to make a good living. 

When I was getting out of the cab he said, “My dad was in the military, I know what it’s like to be in a strange city, not knowing your way around.”  He then followed that with, “If you need to know where to go to eat…call me.  If you need to know directions to a place…call me.  If you’re at a bar and someone is bothering you…call me and I’ll take care of it”.  I chuckled and was grateful for his generosity of service and heart.  I felt like I had a guardian angel.

So translate that to your life following your diagnosis with a chronic or life-threatening illness.  Who has shown up in your life to make your life a bit more comfortable or safe?  Who has shown up in your life that made you feel protected in times of vulnerability?  Even if you never called them for assistance; there’s a comfort in knowing that someone’s got your back.  It’s like having a safety net that you may never have to use and yet makes you feel more secure in everything you need to do on your journey to wellness.

Look around and see where the guardian angels are in your life…I believe you’ll be surprised.  I’d love to hear how and where your guardian angel appeared.  Let me know so we can all marvel at the wonder of the human spirit!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Self-Nurture

Going To Hell

If you’ve been reading the blog you know that I’m temporarily based in San Antonio, TX.  I get to and from work on the bus so I’ve got lots of stories to tell (you’ll have to wait for the book for those stories) about the attitudes we have about things in our daily lives.  Here’s the story…

Last week a woman was talking to a friend on her cell phone, a bit loud because of the noise of the bus, about some legal trouble with her son.  It kept me amused for a time, but as we all know we all have certain obstacles to overcome in our lives. 

Today the woman got on the bus and after a few moments her phone started clucking like a chicken.  She answered the phone, and from her response I believe the question she was asked was, “Where are you going?”  Her response, “Where do you think I’m going…hell!”  I heard that and from last weeks conversation I know she works managing apartments.

I began to think of her comment about going to hell.  I can’t imagine commuting to a job and then spending at least 8 hours in a day I believed to be hell.  Call me crazy, but wouldn’t you look to do something else?  I was thinking about this because I was wondering what part or aspect of our lives do we consider hell and why are we there? 

It’s important following the diagnosis of a chronic or life-threatening illness to rid yourself of those places you consider hell.  Don’t get me wrong, you may not find heaven on earth, but finding a place of comfort and peace has got to do the body, mind, and soul a world of good.

Scientists have shown us that there is a mind-body connection.  If you belive that you’re sitting in hell what message are you sending the body?  If you’re health challenged do you really want to add fuel to the fire, no pun intended.  If the goal is to extricate yourself from hell on earth, take this time as one of reflection and resetting priorities.  Give yourself the gift of peace-of-mind and possibly even passion.

Don’t spend your life in hell; it just makes matters worse.  If you want to be on the journey to wellness take a stand against hell and find joy.

Posted in Caregiving

Walk a Mile In My Shoes

Welcome to Caregiver Friday!!

As I take my daily bus ride to and from work during my stay in San Antonio, I think about all the stories I hear from people on the bus.  They aren’t speaking to me, but no one seems to protect the privacy of the cell phone conversations, so I have lots of stories.

I’ll hear a story and wonder what would I do in that particular situation.  The difficult part is that I don’t have all the information, only snippets.  When we don’t have all the information our brain’s natural inclination is to fill in the gaps with thoughts based on our own interactions.

How does this apply to caregiving?  Even if you haven’t been diagnosed with a chronic or life-threatening illness we’ve all be sick or injured at some point in our lives and know what depending on others is like.  On the other hand, not everyone has taken care of someone who has been dependent.  True if you’re a parent that’s all you do, but it’s different when an adult is dependent because you’re often dealing with issues of guilt and shame on the part of the patient.

So what about empathy?  It’s often for others to understand the stress, pressure, and angst that often accompanies caregiving.  It’s difficult for some people to know what it’s like keeping the plates spinning in the air.  Most of the caregivers I’ve met over the past twenty plus years have worked at great lengths to ensure that the patients needs are met and they are safe and secure as they tackle the health challenge.

It’s for this reason that I strongly recommend that caregivers attend a support group.  The rooms of the support group become your sanctuary, your confessional, your oasis in the desert.  It will be a place where all the negative thoughts you may have or feelings of resentment are acknowledged, validated, and possibly even applauded. 

The members of your support have walked a mile in your shoes, heck they may have gone a marathon in your shoes, so you ‘re in good hands.  It would be wonderful if empathy were abundant, but it’s not and it’s often a difficult skill or gift to teach.

Take care of yourself and be with those who are empathic to your situation.  It will definitely improve your peace-of-mind and will let you know you’re not going crazy!

Posted in Having a Voice

Women Should Be Outraged

I read a lot of health related articles and blogs.   Recently one article in the NY Times caught my attention because it showed the gender bias in our society.  The article was about drugs for lupus.  A new drug for lupus hasn’t come on the market in almost 50 years.  The old treatments are used but nothing seems to be emerging as the new kid on the block.

What concerns me is that the article also stated that 9 out of 10 diagnosed with lupus are women.  If 90% of the cases are women why are women more outraged about the lack of new treatment strategies.  I may not be a woman, but I can certainly be outraged by what seems to be a clear case of gender bias.  Would the same lack of advances happen if 90% of those diagnosed were men?  I Think Not!!

The follow-up question is what is going to be done about this?  Are women’s groups talking about the need for more research, clinical trials, and eventually treatments that will aid those diagnosed with this disease?  How can women’s groups come together and make it a real Women’s Health Crisis?

I know I’m probably preaching to the choir, but 50 years is a long time to go without any new treatment strategy.  If that were true of other diseases we’d be in a lot of trouble.  We’ve got science and technology, so is it the money?  Is Lupus not a high-profile disease?  Do we need some big celebrity to be diagnosed or a politician in order to get things moving along?

What are your ideas?  How can those diagnosed with lupus and their loved ones come out and take a stand for more research.  This illness is often debilitating for those diagnosed so new treatments are not a nice idea, they’ve got to be a priority.  I’d love to hear your views on this health crisis.

Posted in art and healing, creativity and health

Gotta Get It Out

Welcome to Art and Healing Wednesday!!

It’s been an interesting couple of weeks down here in San Antonio (my temporary home), every day seems to bring a new experience.  I went to the First Friday Art Walk and that was terrific.  Lots of talented artists and crafts people showing their work, makes my heart sing.

I’m taking the bus to and from work and yesterday was my first day with that adventure.  There are as many stories as there are people and whether you want to or not, you become an observer.  Even though it’s real life for people, I believe for those around watching it’s almost like performance art.

That’s what I’m understanding more and more that health is related to science, but life is related to art.  The form of the art doesn’t matter, what matters most is the need to be full expressive. 

Being totally expressive means being willing to share your story with the world.  As you know from the books in the stores, the movies, and songs (especially country songs) life doesn’t always work out pleasantly.  You, as someone who is facing your own challenge the need to express is huge. 

One of the things I’ve been honored to witness in my twenty plus years of working with individuals and families facing a chronic or life-threatening illness is that there are as many emotions as there are colors in the Crayola Crayon box.  We’re complex human beings and the tapestry that is our life is colorful, textural, and melodic.  Every emotion and every thought has an artistic equivalent.

I’ve been writing in a couple of journals since I’ve been here because I’ve got to capture the stories of San Antonio.  I’ve got to breathe in the San Antonio culture while I’m here and see how that meshes with my own life experience.  I hope to be of service while I’m down here to some hospital or health organization (if you know of any please pass on my info).

That’s for letting me get it out.  Now I want you to go and get it out. Go sing, dance, paint, write, no matter your choice.  GET IT OUT!

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

And We Think We Have Problems

As I mentioned yesterday I’m working in San Antonio for a few months and today was my first day on the bus.  I took the bus from the airport, dropped off the rental car, to work.  Along the way a guy got on and started speaking with this woman sitting beside me.  As the conversation progressed it was clear they knew each other, in fact they were husband and wife.

 They had each been staying in different shelters in the city so they hadn’t been together.  She in 7 days had found G-d and was being saved, while he was staying sober trying to work on his anger issues.  As I listened to their conversation, couldn’t avoid it, I realized that whatever caused strife in their lives had derailed them so severely that it hindered their relationship.

 Did your diagnosis derail you?  I know for many hearing an illness diagnosis from the doctor put them into the stratosphere.  It definitely impacts every aspect of their lives and their life becomes their illness.  It’s obvious that certain events in our lives knock us off our feet and cause us to re-evaluate almost everything in our lives.

 I felt sadness listening to this couple because they had reached a point of surrender with each other.  Maybe they were each other’s disease, I’m not sure, but each had reached a point of resolution within themselves to lead their lives differently.

 I believe the same is true for those with a chronic or life-threatening illness.  There comes a point where you may re-evaluate your priorities and even consider putting yourself on the list as a priority.  What do you need to re-evaluate?  What if anything do you need to surrender to?  It means you’ll have to stop digging in your heals and leave yourself open to the realm of possibility.

 Having a health challenge is serious business, but everyone has something in their life that’s serious business.  These days more and more people are losing their homes, people in the Unites States, the richest country on the planet, are going to bed hungry.  It’s all about perspective.

 It’s important that you utilize all resources available to you because the goal is to reduce the amount of trouble and stress to promote health and healing.