"Why Did This Happen to Me?" We Ask. My Answers: Raise the Bar!

I wanted to write today about one way a person with chronic illness/pain/fatigue might answer the question "Why is this happening to me?". I have written another piece in this forum related to chronic illness and the support system around you understanding why it is a person with chronic illness/pain/fatigue might not find the ambition to do things they don't particularly enjoy or 'want to do', but they DO get out there for things they want to do.  That's something families and friends tend to not understand and be critical of.  I wrote it because someone who had a cancer history wasn't understanding about someone in her system who had fibromyalgia.  It's just a different thing, the C word, versus the F word, as I call them.  Since most people now know what fibromyalgia is, and what cancer is, I'll use fibromyalgia as the example here.  Handy, since I was diagnosed with it in the late 1990s.

"Cancer" is known to kill people in a shorter period of time than "fibromyalgia" does.  When conventional cancer treatment strarts, the effects are dramatic, sometimes including hair loss and a lot of really horrendous other things; nausea, chemo brain, etc.  People rally around, because they know what to do! We were raised knowing how to help when someone dies or has a serious illness.  Other chronic illnesses kind of slink in and take years and years to develop, then the diagnosis might not be immediate and right on, and the providers might try various medications.  With conventional medicine in the US, and other places, it's not like the system says 'you have fibromyalgia and you need to have something invasive done to your body to help you and then in a short period of time you'll either be better or you'll be dead'.  And this is important to note that if we are going to be the leaders of our health care team, as the Lumigrate You model conceptualizes, WE HAVE TO REALLY UNDERSTAND where we are at with:

• what our illness is and what we're going to do about it; have a long term goal/plan and short term
• why we have it
• who needs to understand it as well as they're your team that has a lot to do with your future 
• where might this go?
• when are we going to go about the things that we outline in goals that have to do with 'what'
• and HOW are we going to deal with it? 

To me, the first thing people need to look at is the medical model they're operating under and if that works for them.  We're in a transition in the US where health care is going to an 'integrative medicine' model increasingly, but historically it's been the allopathic model, where the doctor is in the power position, not the patient.  Any times systems shift it takes at least a generation, so we're going to have many years of transition.  I think it's important for people to understand that no matter where they are on the wellness/illness continuum.  

Integrative medicine, which is what Lumigrate launched with in 2009, including information on the collaborative care model which has been proven to decrease costs and increase outcomes, integrates 'body, mind and spirit'.  So when people who are used to the allopathic model goes through the above process, with allopathy only looking at body and mind, it creates problems in a lot of cases. Importantly to look at how allopathic medicine has separated mind and body rather than looking at them holistically, which then causes problems because there's been a stereotype about the mind -- "the loony bin", coo-coo, bonkers, crazy. Another example which makes no sense from allopathy which integrative medicine improves, in my opinion, is bringing dentistry into the picture.  Why have dentists been separated off to operate on their own? Their not even included in health insurance?  Medical insurance might have benefits for mental health, often they do not, but it's in a separate 'carveout'.  And nowhere is there a benefit for us to pay someone who can help us with our spirituality, it's up to us to take that out of our pocket.  

Spiritual advisors and entities, which have increasingly had to roll up their sleeves and beat their coffers to help people who have medical problems, have increasingly gotten people within their organizations who can address the mental health issues.  As more people utilize hospice and palliative care services, which have creatively trained their chaplains to be medical assistants, there will increasingly be a shift within families to see spirituality as part of health care.  

So if you're reading this today, I hope you'll step away from the computer in the near future and think about this: Perhaps print this out and write some notes on the back about your thoughts on the main points, above.  Where is your spirituality in your health?  For me, when my teeter-tottering health crashed in 1989, when I was 29, and I had a very significant case of what is now called chronic fatigue syndrome, I identified myself as an 'agnostic'.  I had been raised 'atheist'.  By the time I was getting over being 'disabled', and was seeing the improvements and starting to be able to absorb what had just happened, I asked, in a moment of deep reflection from my living room windows, which faced the Rocky Mountains "Why did this happen to me?".  What happened next changed my life.  

An answer came back.  Not in the form of 'words' that I heard, but a sensation, similar to my first memory of being a toddler in a crib and wanting to be let out and the adults laughing at me for being so worked up into a fit (which was essentially a thought I remember which didn't have words as I didn't yet know much language I'd imagine, and today I'd say my words were '@#$% you people! What kind of elders do I have taking care of me?').  The words I would put on what came back when I asked the question in 'prayer' or 'reflection', in agnostic words at the time, as I had told people at the time, was "it has to do with something 'out there'".  In the two decades since that day, I have come to have a deep belief in G-d, and I write it that way intentionally to simply signal that it might be a bit different than most people think.  

And for me, I've come to know, not 'believe' but embrace, trust, have validated over and over again -- know -- that this lifelong health dilemma is the learning tool for my soul. The way that all the pieces to the puzzle of my years since being born with a brain injury in 1960 and even what my mother was doing before I was born, and the genes I inherited from my father, have been for the purpose of me to have the experiences I have.  The career I've had, where I was pushed through many different jobs as soon as I became an OT, enriched my toolbox and eventually lead me to say "I have got to start my own business and get out of this messed up big medical company world in which my sense of ethics does not fit".  

That was not in my 'character', nobody in my family had ever owned their own business.  Within a few years, where I worked on call/PRN for a home health agency as well, it was taking my full professional time budget and providing revenue sufficient to sustain the business.  I foresaw since it was insurance-based and occupational therapy's the first thing to get cut out of budgets, it would be a good time to switch to Internet-based occupational therapy.  

"Occupation" means anything that occupies your time, and for people who have health issues, it's a huge chunk of our time to deal with all the aspects; appointments, medications, supplements, education, activism with our insurance companies and politicians when appropriate.  I joke and say that I'm lazy, like everyone else, and wanted to have all the information I needed for people to use in one place so I built Lumigrate, but that is essentially what I'm doing.  You might think of it as a 'virtual integrative medicine center' of education with some providers attached who can help people remotely.  

For people who have spirituality as part of their needs for professional guidance, we have Beth Patterson who consults with people for a sliding scale.  She's not only a very experienced CFO of hospice and elder care organizations, she's getting a PhD in religious science and has a coaching certification which allows her to work remotely with people.  You'll see her pieces in the Spirituality forum.  

We also have a talented, wise old hippie Yenta who writes in a forum titled "It Can't Hurt", because she can masterfully weave a serious concept for the brain, having to with the body, and bring it to touch the spirit.  The woman who writes Yenta is having a birthday today, so I wish to dedicate this piece to her today and thank her for her contributions for over two years now, to Lumigrate's forums.  I hope we'll see much more from her in the future.  

And 'spiritual stress' contributed to the fracturing and difficulties that my family went through at the end of my father's life, which essentially coincided with when Lumigrate hit the Internet and continues to go on today due to the way the legal process draws things out in order to reap more rewards/money.  This has lead to a complete fracturing in my family.  Which was very hard, naturally, but I basically did the process I've outlined above AGAIN in recent times and saw that one of the biggest detriments to my health was my family's not taking the opportunities of the last 20 years to learn what my health issues are, how to help, etc.  

"They were a hindrance, so good riddance... for now, until you change and can be good for me or neutral but not bad." Because my medical issues had taken me in a different direction than the belief system in my family, which was a very 'clique-ish' family, where I'd been more of a team with my mother, and my sister and father were a team, I ended up the "odd woman out".  It's much more complicated than this, naturally, but I bring it into this piece because, as difficult as it has been, I also looked at it as being part of what my lessons were to be, and it wouldn't have happened if I wasn't supposed to be ALSO making Lumigrate have end of life and aging information as well.  That truly wasn't my original intention with Lumigrate, it was to be just about fibromyalgia.

But from the day I started getting an office space arranged in an integrative center with it known that I was going to mine information for a website related to patients with chronic pain/fatigue/fibromyalgia, things started going in different directions.  Naturally I was very frustrated about that -- time is money and it was NOT good on the money end to have things take more time -- and I 'got it' -- Mardy, you're not driving the bus, G-d is, just see where the bus is going.  Figure out where to sit down, talk to or not, where to get off, and then do it again tomorrow after refueling and resting overnight.  

That was in 2008, almost four years ago now.  In 2000, I was so exhausted and unwell I had to stop working.  I went to financial counseling and they recommended I file for bankruptcy and they recommended I file for disability. I didn't look forward to each moment, day, or the days ahead if they were going to be like 'today'.  It was awful, and unfortunately I was one of millions who had been the victim of what I call 'mangling medicine' at that point.  Since I had my spiritual beliefs, I turned inward to my connection with G-d, and said "I trust that this is happening for the reasons I am here on Earth in this body and with this life, so I will trust that it will all work out to go forward from here... 'bring it'". And one thing after another happened over the next days, months, and years, which lead to my creating Lumigrate. (And by the way, I picked up the idea of writing it G-d from our Yenta, who I'd sought out to write at Lumigrate to highlight the spiritual aspect of integrative medicine content at Lumigrate.)

In closing, I want to talk about 'teachers'.  I posted a question on Facebook recently to ask if people had a teacher in their life that had been critical for them.  Everyone thought 'school teachers', even after I posted that mine was Petie the OT, who came into my life as a mentor in 2001, five years into my career.  (Luckily I am independent and can figure things out on my own, but boy was it GRATE to have a mentor I could call when I had a question!).  

My biggest 'teacher' related to spirituality, since 1996, was someone who came to me through of all people, my hairstylist.  She wanted me to take classes with her but it was when I was doing classes for the OT degree and I just didn't have time.  And it took me TWO YEARS from the time she first suggested it until she finally got to where so frustrated with my not doing what SHE saw as what would help me, and she literally hit me on the top of my head and said 'will you PLEASE call Gail now?'.  So I finally did.  Why did I resist?  I'd not perceived myself as someone who would pay someone $ to talk about spiritual things. And most importantly, due to my many years of being an atheist or an agnostic, I didn't see myself as someone who had a component of 'spirit' to me!  

Sometimes we really need to unplug and look at ourselves NOW.  Or look at those around us with a new light, as I have with those on my 'team' that were providing the biggest problems in my life, which were affecting my health and well-being.  So again, in the time since my father's life passed, I did that process related to my 'family of origin' as I have now come to distinguish. Because my family now is what I've written about in the past, called 'framily' -- people who have taken the time and interest to put energy into getting to know who I am, and who always treat me respectfully and act in my best interest.  Due to having such a poor example from my family of origin, I had a rather low bar; the bar has been raising ever since I was in my 20s, and that caused a lot of turbulence and friction because I wouldn't get people who weren't 'at the bar' out of my life, as I'd grown up having to work with people who are below the bar!  

I encourage you to look at where your bar is at, how it got there, why, etc.  I hope this piece is helpful to those who read it, and again, there are now a couple thousand pieces at Lumigrate.com in the forums so there's much for those who want to roll up their sleeves and get to work IF that is what feels right to you.  And if not, that's okay too -- everyone is where they are.  And we'll be here in the future for you.  Again, this I know, thanks to the spiritual advisor that came to me through a smart and wise hairstylist LITERALLY a generation ago.  Remember how I said it takes a generation for systems to change?  That applies to individuals too.

Live and Learn.  Learn and Live Better! ~~ Mardy