Tag Archive | recovery

Did I Make Myself Sick?!

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Did I make myself sick?
This is a question that has always haunted me. And most recently it has resurfaced.

If we have the power to heal ourselves than the inverse must also be true… we have the power to make our bodies unwell. Right?
A week back, a dear friend was doing some energy work (Reiki) on me. During this session, she received messages from my body. This is not uncommon, and I generally find these messages very helpful.

This message was deep and powerful. My friend told me , “The reason your body is filled with so much sh*t is because you have held on to too many secrets from your youth. And by holding all of this in, it has accumulated in your body, therefore developing disease. It is time for you to speak your truth. To no longer be afraid of how it may affect other people, only to share your story. I feel that by sharing your entire truth, you will be helping many others who are struggling, silently, with similar experiences. This is your path, not only to help others, but also for clearing out all the ‘crap’ and getting well.”

I’ll admit at first this was empowering. All I had to do was write and then share, without fear, my experiences. A clear path to wellness was laid out for me!

And I did start writing. It was, and is, a freeing experience.

But I also started to think about the root of the message: by keeping these “secrets” (which for me surround years of sexual abuse at young ages; a fact my friend was not aware of, making the message all the more powerful), I had made myself sick.
That’s what it came down to. And I started to feel uncomfortable about this.

I shared a summary of this message in my monthly spiritual group. The theme was Desire; and I had written a free-floating thought poem…

“Desire, what do I desire?
A morning song without the rain
A day long reprieve from the pain
A skip, a jump, a roll in the hay
Unencumbered freedom from a body untamed…”

By the end, my desire had become simply for a life of feeling connected, “to know and be known” and towards “internal peace and love of self. To acceptance of Me; and every day I’m Here…”

But, this is the kicker: there was just one line in there that my fellow group members picked up on: “I have been told that I fore-chose this life…”

And they became incensed, on my behalf. Telling me not to take on someone else’s dogma as my own. That that would mean that all Jews murdered in concentration camps fore-chose that path, as well as other startling examples.

So I took both opposing views and sat, to develop my own.
I began to think of a young girl I know, just finishing her first year of preschool, and her almost third year of constant chemo for a rare form of cancer. And I thought, “How could a 2 year old fill her self with enough secrets to make herself sick? How could her story possibly be long enough yet, to tell, ridding her mind and spirit of this ‘baggage’, making her body well?”

Yes, I believe we all have the capabilities to make better choices for our spirits and bodies, to live from a mindset of wellness that leads to true physical wellness.

But there is also a huge component of our diseases that are out of our control. And if we get stuck in thinking, “Why am I not doing enough or the right thing to make myself well?” Along with, “What did I do wrong in my past to make myself ill?” It will only lead to a place of despair.

I have received many messages that I have the power to make myself well. But I do not believe that means I am meant to “fix myself” on my own!

It means a myriad of things: making the right choices for my body, through eating well and exercising; strengthing my circle of support with old and new friends, and accepting their help, without conditions; choosing a team of well-respected doctors who can guide me; doing just enough research to be informed without too much to fill up my head (we all know what I mean!); meditating and doing activities that lower my stress and pain levels; keeping my physical space free of clutter and my sleep space a place of renewal; taking time to laugh as well as cry; and so much more…

I also take time at least once a day to visualize a little army of worker elves marching through my body and fighting off my disease; sending it into Mother Earth to be cleansed, recycled and renewed into something beautiful and useful.

These are tools I think are helpful for any person…well- or dis-abled.

And, yes, I will continue to write my story. Just by being away from the blogging community, I have gotten “clogged up.” There is power in speaking one’s own truth, sharing it with others, and hearing their truth spoken back. This can only aid in the progress of my healing.

But can this, or myself, alone, “make myself well?” That’s a tall order! And all it makes me think is that I somehow made myself sick. And that’s a very isolating thought.

I, alone, can’t fight any of this.

That goes against My Dogma: It takes a village…. To keep the flame alive and pass it on.

I don’t know why I live a life filled with unpronounceable, rare illnesses. But that’s not my job to know or figure out either.

The only difference between me and that precious 4 year old girl is that I know I am sick where she does not (quite yet). Her attitude can teach me, and us all, a great lesson. She just lives each day as it comes. Feeling her feelings when they arrive, asking questions with out shame, playing when she feels like playing, resting when her body tells her it’s tired; and loving everything and everyone around her deeply, with natural childhood enthusiasm. Her disease is a part of her day, but it is not who she is.

She did not make herself sick, and the key to “making herself well” is already inside her: its by going forth one step at a time and not missing a beat when she has a chance to fully embrace and engage in the gifts of life that are in front of her!

It’s as simple as that. Not secrets, not truth telling, Just Living.

Poked and Prodded, Jibbed and Jabbed

I realize that during the last three weeks I have been poked, prodded, squished, jabbed, plugged in, dilated, tested and re-tested.  No wonder I feel exhausted!  Since the beginning of 2014, I: have had my annual boob squish (yippee!); underwent cardiac testing; was “shot up” with my second infusion treatment (TNF Inhibitor); had an “invasive” G/I exam and tests; had the pleasure of my eyes being dilated while being chastised for not coming in annually (“you know, you do have a lot of underlying medical conditions that effect eye health”… duh!); got my monthly blood-work completed; was stung with almost 30 Botox injections in my head and neck; and then to top it all off … was submitted to two corticoid-steroid injections in my S-I joint (the hardest to reach=tailbone area) and my hip as well as three trigger point injections in my shoulder area (no numbing meds. with that one=double ouch!!). All in 21 days!

Yet, strangely, this feels normal to me. How weird is that?!

Just last week, a friend was telling me how exhausted she was.  She had just finished a day filled with two medical appointments, a flu shot and DPT shot, as well as some blood work.  And I understood!  Yet it also gave me a deeper perspective on what most able-bodied people find taxing.

And it gave me a great sounding board for helping her to better understand what my daily life is like.  Of course, I didn’t share this with her on the spot.  She had a right to her own exhaustion and some empathy from a caring friend.  Bottom line, isn’t that what we all crave?  But later in the week, I brought up her experience as a starting point…

I asked her to recall how depleted (and violated) she had felt on this day of appointments and tests.  I told her that I, more than most, could 100% relate to her experience.  Then I followed up with, “you know how you felt? Well, just to give you a little perspective, that’s what it is like for me 2-3 times a week, on an average week.”  I saw recognition light up behind her eyes.  And I realized that it is difficult for others to understand how the chronically ill feel on a chronic basis.  We all need a compass point to help guide perspective.

Another dear friend has often said to me, “I imagine how horrific it feels to have the flu.  And then I think of you, and try to imagine what it would feel like to experience that all-over pain and fatigue every. single. day.”  She sometimes follows-up with, “It makes me feel like crying.” Ah, me too.

So I realize these are all good starting points to increase the awareness of our “well-bodied” friends and family.  Our barometer for pain is at a higher set point than most.  We have to be that way in order to survive (and hopefully even thrive, at times!).

But it is also important, if we want to maintain honest integrity with ourselves and others, for us to attempt to explain what this means.  Being chronically ill is… a constant cycle of preparing oneself for upcoming doctor’s appointments and tests.  The emotional roller-coaster is taxing both pre- and post-visit: Is this the day I will get bad news or good news?  Is this the doctor that will have a new idea to help me with my illness(es)?  How many slips for subsequent tests will I leave here clutching today?  Can I even afford to go to the doctor’s today?  How am I going to get there; am I strong enough to drive myself?  Should I have someone with me so I am not the only one hearing the doctor’s words? Is this going to be another appointment with the summation, “I’m just not sure how to help you.” shrug.; Do I even get my hopes up?

Then there is the physical toll. Just getting ready for these appointments can be exhausting; sitting for long periods in the waiting rooms can be even worse.  Waiting in uncomfortable chairs (especially the hard plastic ones in the exam room!), can wreak havoc on a chronically ill body.  Then doctors like to (and, let’s face it, should be) physically examine your body, too.  Herein comes the poking, prodding, jibbing, and jabbing, all igniting flares of various “hot spots.”  Whether it is abdominal pains, muscular and joint pains, neuropathy, etc… we don’t like to be excessively touched!!   And are bodies will let us know this with a snowball effect of all over and hyper-aware pains (allodynia) throughout our bodies for several days after the appointment.

By the time we start to recover, it’s time for the next onslaught!

And, in between all these appointments, we want to live life… and not just inside the walls of hospitals and clinics!

We don’t need your sympathy.  But the next time you are feeling all-over exhaustion from a day at the doctors, an afternoon full of tests, or a bout with a cold or infection, think of us.  And give us empathy and understanding.  That’s all we truly crave.

Thank you.

Think Fast! Here Comes Another of Life’s Curve Balls

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I actually do not know where to begin.  Life threw me another curve ball and I am beginning to discover I am quite the adaptable catcher, born out of pure need.  We returned Thursday night from a wonderful yurting experience and I hit the ground running Friday morning (well, limping, actually!).  A friend and I met and went to our monthly spiritual group.  This month’s topic? Delight.  Finding delight in all areas of life (from sunsets to warm soapy water when washing dishes) and discussing feeling worthy of receiving delight.

A conversation arose about my ability to find delight even in the most “unpleasant of circumstances.”  Little did I know that this theory was going to be put to one of my most challenging tests mere hours later.

We were in the car in my driveway post gathering, waxing poetic, as this friend and I can so easily do, when my husband came out with furrowed brow.  “Um, Tam, I’m sorry to interrupt.  But, I just found out that Nick was killed in a motorcycle accident while we were away.”  My mind sputters, “whhh..at? WHAT?!”  We embrace.  A state of shock quickly follows this sudden news.

There are no ways to describe losing a peer; a man in the summer of his life, just reaching the peak of his full potential.  A friend who when described, the most often used adjectives are “vivacious” and “vibrant.”  Nick, who sparkled with life and quickly drew anyone and everyone into his light.  As his father said, “he lived large.”  And that he did.  But, shouldn’t he still be living that life?  Where is “God’ Plan” in a circumstance such as this?  Yet, there is no plan.  I do not believe God is sitting on a perch high above, pointing his finger, declaring “You shall live and you shall die.” It all feels so senseless.  But, just as I can find delight in unpleasant times, I can also find meaning in the most dire  of circumstances. . .

When his brother spoke at the funeral, he told of a hike the two of them had taken together on Nick’s 40th birthday, about four years ago.   Chuckling, he said they spent the entire time talking about life’s philosophy.  At one point, Nick turned towards his brother and said, “Doug, How do you make it to the next Christmas? You know how you look forward to Christmas for weeks heading up to it?  As the anticipation grows, so does the excitement.  Each day closer builds suspense for that ‘big day.’  And then Christmas arrives and it’s fantastic.  But then you wake up the next morning at a loss.  You can’t start gearing up for the next Christmas yet, because 12 months of waiting would just be too long.  So you start to wonder how you’re going to make it until the next fall when life begins to feel good again.  How do you make it through those days, Doug?”  Even though Nick burned with the intensity of life on the outside, inside he struggled with his own inner peace.  But, this is where his brother continued the story. He shared that this was a turning point for Nick, a time where he decided to make a lot of changes in his life, to reach out for help from others and to change his philosophy on living life.

Nick began living his life “one day at a time.”  He knew that all he had to worry about was just getting through the next day.   And not only did that bring life back down to a manageable size, he now also greeted each day with the thought, “how am I going to fully embrace life for today?”  And embrace it, he did… if he thought of a long lost friend, he would call them.  If it was his brother’s 40th birthday, he hopped in the car and drove 5 hours to surprise him for dinner.  One day, he grabbed his son and they got on a train headed east until they wanted to get off; they stopped for some lunch at a random train station and got back on for the return trip home.  Just because.  He promised his daughter the same when she got a bit older.  That father daughter trip (this time a spontaneous day trip from Rochester, NY to Chicago), happened just two weeks ago.  If he hadn’t taken the approach of “one day at a time” and instead was waiting for “that perfect day in the ‘sometime’ future,” that trip may never have happened.   But instead, his children now have this memory to relive and hold on to anytime they miss their dad.

During the service, the minister used several metaphorical stories.  He first spoke of seed packets and the date that is stamped on the back declaring how soon (or how long) a particular vegetable will reach “peak harvest.”  He asked that if we were to know that date when a child was born, when a friend was made, when a mate was found, would we send them back or turn them away if the date was too short?  If the harvest of their life came at 2 years, 16 years… 44 years? Of course not.  We would choose to embrace the time we have with them, to not waste a precious moment.  And since we do not have the insight into these dates on living beings (thankfully), we need to approach each day fully, to not waste another moment to embrace those we love.

On this note, he spoke of a couple who just celebrated their 75th wedding anniversary.  When asked the typical question, “how do you make a marriage last?”  The husband told of a gift given to him by his father on his wedding day.  It was a pocket-watch and when opened it was engraved with these words, “Say something nice to Sarah.”  What a beautiful, simple reminder; each time you check the time, pause to share a kind word with the loved one next to you.  In a sense this could be extended to anyone next to you.  Perhaps that person is a stranger who so desperately needs to hear a gentle word on that day.

And that brings me full circle back to my friend Nick.  Nick employed these techniques in his interactions, every moment of his day.  There were people at his funeral who had only known him a few months, but felt just as deeply connected to him as those who have known him for years.  Because he would notice that person standing at the sidelines, feeling uncomfortable, and he would draw them into the fold.  He loved to engage in a volley of the minds and was very knowledgeable on a wide range of topics.  But he would always encourage others to educate him and challenge his mind.  He made you feel special, respected and heard.  That’s a gift we can all take away from his life.

When his father spoke, he read from 1 Corinthians 4-13 (abbreviated quote below):

Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres… Love never fails… For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

 And now these three remain: faith, hope and love. But the greatest of these is love.

Most of us are familiar with this reading from weddings.  It is not often read at the time of a death.  But, why not?  Death of the physical body cannot extinguish the soul of the person; the place that holds LOVE.

We were charged with carrying this message forth as we left the church.  Of continuing Nick’s legacy by remembering these words of compassion and kindness.  The minister told us to find people who do not have love in their life, and bring it to them.  To pass on our love to others.  To think of what Nick would have done in a similar situation.  And although it does not ease the deep hole of pain and loss burning in my heart right now, I find comfort in this concrete action I can take.

And this is where I find peace in “God’s plan.”  God’s will is not for us to wither and become hardened by the loss of someone (far too soon); it is to continue the spirit of that person in the living.

As Thomas Campbell said…

“To live in the hearts of those left behind is not to die.”

When we question the “why” of mortality, we often also question the “why me?” of life in general. “Why was I given this chronic illness?  Why do I have to struggle? Why does my loved one have to suffer? Why do the ones I love have to leave me?”   But, perhaps we are asking the wrong question.  Instead of “Why me?” how about asking “what next?”

So, “What’s Next?!”  What are you going to do with your one day?  Each morning starts a new one: a new opportunity to fully embrace life and those we love.  And if today’s the day you are struggling with how to make it to the next Christmas, remember, it’s just one day you have to get through before the winds change and different one arrives just 24 hours later…

·         How can you Spread Love today?

·         When you check the time, what loved one is nearby? Say something kind to them…    **That loved one may just be yourself!!**

·         What spontaneous act can you do today to fully live the next 24 hours?  (from a train ride to sitting outside and watching the birds nest to calling a family member to remind them how much they mean to you).

·         Who can you write a “love letter” to today?… one to yourself, marked to open one year from now? one to your mate that you stick in the mail so they get a surprise in 2 days? a note to your child for them to open when they turn 18? or a letter to someone who died before you had the chance to tell them how much they meant to your life?  Love letters can HEAL