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.

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

Missing Pieces

I’ve been in San Antonio, Texas for the past almost three weeks.  I’m working down here till December so I’ve had to make some adjustments in my life.  When I first got here I had internet at work, but not at the apartment.  That meant that the blog posts had to be put on hold while I got adjusted.  Finally I found a solution.  I tried dealing with the local cable company, but not a great experience.  Through the magic of modern technology I got one of those USB modems so I can log in anywhere since it’s like a cell phone connection.  It’s a relief to have this part of my life back.

The separation from my practice of writing was difficult because I kept thinking the thoughts, but was only sharing them with myself.  The Pilgrim Pathway/Surviving Strong part is so integrated in my life that the disruption caught me off-guard.  I’ve felt a bit off-balance, so now I can get back to things as I knew them.  It’s a lot like after an illness diagnosis.  The things you love to do, to eat, etc. may have to be put on the back burner for a bit.  The body, mind, and spirit all need time to adjust to this new event.  For many of us with an illness, our body-mind-and spirit find a happy meeting place and balance begins to be restored.

You may have a period of grieving if you can’t do something you love, or eat the food you used to love, so what are you going to do in their place?  Are there foods you enjoy that you tolerate?  If so, eat them on a regular basis.  If you don’t have the physical stamina to go to the gym find gentler movements, visualization, or some other activity (check with your doctor before doing this so you don’t harm yourself).  For me, I’ve been keeping a journal about my San Antonio experience.  It will be something to look back upon down the road.  For now it’s simply a record of my experience.

I know that you may feel like there are missing pieces to the whole, but sometimes we have to make substitutions.  When we do find those substitutions I hope you’ll honor the new experience and welcome it into your being!