Enduring Darkness

A friend who has battled the same illness as I do for over a decade called me and asked if I ever feel like a loser because I do not do anything, as it is something she struggles with.

Fighting for your life does not qualify as doing nothing with your life in any way, shape, or form. In fact, it means you are doing everything with your life, everything to keep its existence.

Although I am generally seen as a more positive person, the truth is that yes, I feel that way at least once a day, if not multiple times a day. While it comforted her to know someone else feels the same way, she also wanted to know my solution to dealing with such thoughts.

My answer surprised me, as I have been searching endlessly to no avail for an answer as well. I told her I feel like a loser when I see others going on about their lives, graduating college, getting married, having babies, beginning new careers, and doing other exciting things I grew up dreaming I too would do; but that there is more to their lives then what I see, just as there is more to mine than what others see. While social networking may make their lives look perfect, the truth is they too are facing their own battles, are enduring their own pain.

We are not doing “nothing” with our lives, although it may feel like it as we lay in bed day after day, struggling to survive -but that’s just it, we are fighting for our lives. I am not sure of a more intense way of living than that.

Fighting for your life does not qualify as doing nothing with your life in any way, shape, or form. In fact, it means you are doing everything with your life, everything to keep its existence. We are not losers. The people I know who are battling debilitating chronic illnesses are the strongest individuals I have ever, and most likely will ever, meet. When defeat comes knocking at their door, which it sometimes does multiple times a day, they open that door and face it. Typically, they do not do it fearlessly, and that is what makes them so strong. They feel the fear, and do it anyway. These are the people who keep me going.

Recently, I went through a stage where I realized I had no grand reason to get well and I knew until I did I simply would not fully recover.

After many sleepless nights searching my soul, and often times searching for my soul underneath the rubble of both real and mind created tragedy, I gave up. I dropped my resistance, not out of some spiritual form of acceptance of what is, but out of the acceptance that I would never find an answer and was doomed to live a life of devastation and darkness. I suppose the reason why I dropped my resistance was, in the end, irrelevant. Because after I did, the answer I had been searching for came searching for me.

A girl from another country answered it, once again by asking me the very same questions I had been dwelling on before the acceptance of my impending death. I was walking out of a neurologist’s office, which in itself is a big sign I had given in to defeat as I am not much of a fan of western medicine and numbing my mind with pills, when an email alert popped up on my phone. I had been neglecting answering, or so much as even opening, messages of any kind from anyone.

After all, I no longer had anything to offer, or so I thought. However, for some reason I opened this particular email. It was from a girl claiming she desperately needed help because she was at the end of her rope and ready to give up. She requested for me to call her as soon as possible.

Given I had already severed my own rope and thrown the towel in, it seemed unlikely I would be able to help her do anything but free fall into nothing as well. Still, I called her the minute I got home. I am not sure why, and I am learning it does not so much matter why things happen.

Rather, it matters what we do with them. When I spoke to her, she was overflowing with trauma. I did my best to ease her mind, to calm her, if only for the brief amount of time we talked. I knew I could not completely heal her inner conflicts, but that the relief stemming from the comfort of having someone listen and acknowledge your inner turmoil for even ten minutes is invaluable. It is those ten minutes, or however long the feeling of not being alone lasts, in themselves that change lives.

losing friends due to illness

What we fail to realize is how offering up a tiny amount of the time we spend dwelling on our own pain, which only amplifies the suffering we are so desperately attempting to grope our way out of, in order to listen to another’s cries for help during their own pain not only reduces their suffering, it reduces ours.

Not only do we give them a hand out of the hole they are attempting to grope their way out of and pull them up, even if only by an inch, they simultaneously do the same for us.

When I finished speaking to this woman regarding why she should continue on with her life and not give up, I realized why I shouldn’t either. These people need me, and I need them. You and I, we need eachother.

Those of us with Lyme disease are part of a collective movement of evolution, that much is clear. As the bacteria continues to evolve, it becomes clear we must do the same.

There is no question about that. It does not matter why we are the “unlucky” ones who were selected by the “evil” of the universe to endure such pain and darkness (by the way, everyone is facing their own version of darkness, we aren’t really a group of victims whom suffering is unique to. It is a part of all humans’ experience, we just don’t see others darkness as clearly or -obviously- “bad” as ours. But… that’s okay, because others feel the same about our suffering. Point is, we are all victims in some way but it’s not okay to be weak and stay a victim blaming circumstances for not living with purpose ), it matters how we endure it. What I am trying to say is, we have a choice to simply endure or to put it bluntly and inelegantly— to take our shit and work to turn it into gold. A bit more elegant would be to say:

we can choose to face darkness head on and slay our dragons, and persevere and find meaning despite life’s horrors.

 

Journey Through Pain: Distinguishing Between What Matters and What Doesn’t

While enduring a pain filled night induced by the full moon of 2014, along with Bartonella and many other factors, I decided to do something different. Rather than worry about the fact that I must sleep in order to heal, I decided to use it as an opportunity. Either way, I was up with insomnia, so why not use the time productively? Being productive,  for me, is about working towards healing your inner self because all else follows, and I truly believe there is a definite difference between healing and curing. Healing has to do with your spiritual journey, curing has to do with your disease.

Long story short, I spent my time reflecting on what matters most. What I found is that many negative things that I thought mattered did and do infact matter, but for a distinctly different reason than I thought.

They matter because they each hold the potential to act as doorways to wisdom, insight, and spiritual growth -thus making them essentially positive. Of course, how we deal with negative situations is our choice. We can stay stuck in them and dwell on their occurrence, avoid them altogether out of denial and fear of further pain, or we can go beyond them.

By going beyond them, rather than ignoring them or getting stuck in them, we must go through them. I found that when we do, the hidden meanings behind things dramatically change. Personally, this is what I found to be true:

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Journey Through Pain: Distinguishing Between What Matters and What Doesn’t

It does not matter how many times we are humiliated, it matters how humbled we become from our humiliation.

It does not matter if the people we thought were our loved ones leave us, it matters that we halt our hearts from leaving with them so that we may continue to love, refusing to abandon ourselves because we have been abandoned.

It does not matter if we are outcasted by cowards, it matters that we transmute their cowardice into our own bravery.

It does not matter if weak people, deliberately or not, try to tear us down, it matters that we use the energy emitted from their actions to motivate us and build ourselves up, allowing ourselves to become strong  not only from our own weaknesses, but from theirs as well.

It does not matter how painful the tragedies striking our bodies are, it matters that we use them to learn that we are more than our bodies, thus enabling ourselves to separate our true selves from pain, preventing us from inflicting further suffering on both ourselves and the world around us.

It does not matter how many parts of ourselves we believe we have lost,  it matters that we allow the openings left by their absence to serve as windows for the universe to shine through, ultimately creating a life in which we gain much more than we lose.

It does not matter if we break down and feel sad at times, it matters that we use our breakdowns as vehicles to remind us that others are experiencing the same thing, signaling we must build ourselves up so we may help them, rendering both parties unbroken.

It does not matter how many people leave us during our darkest moments, it matters that we use those moments to pay gratitude to the universe for showing us the parts of our lives filled with illusions rather than love, thereby ridding of us unnecessary negativity to add some degree of light to all that is dark.

It does not matter how often we cry, it matters that we use our time spent crying to reflect on all things from a point of objectivity, so we may come out on the other side with deeper insight and an authentic smile.

It does not matter how horrific and seemingly unfair the things we see and feel are, it matters that we stare them in the eyes rather than shrinking away from their existence, so that we may drop the veils between the doors of perception and reality, essentially exposing all truths once hidden.

It does not matter if we put on a brave face of cool aloofness in front of others in an attempt to create an image of grace,it matters that we realize there is no aloofness in genuine bravery, rather there is intense emotion in which we unashamedly and fearlessly feel, as that is what it means to be human, that is what it means to show true grace.

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Guest Blogger Don Ashcraft Finds Humor in the Hospital (Something We’d All Be Wise to Do)

Guest blogger finds humor in surgery for Lyme disease
Photo by Bernard Hermant on Unsplash

It took me two years to learn to do what Don Ashcraft does when anxiety knocks on his door. He channels his energy towards creative projects rather than racing thoughts of the ego. He transforms fear and isolation into opportunities for inner exploration and growth, laughing his way through the darkness and into the light. Aware that I am going to be in the hospital next week, he took the time to share his own humorous hospital story with me, as a means to ease any anxieties I might be having myself -which is to say, he is using his anxiety to relieve the anxieties of others. Here is his story, may it offer you comfort and smiles wherever you are:

“So I recently underwent a minor surgical procedure (I am fine and all is well). The pre-op intake nurse had me answer a lengthy and very personal questionnaire. Who do they contact if I die? My marital status? Living wills and religious preferences? So here I am, already full of pre-op anxiety and believe strongly in not upsetting or angering the same people who are about to cut me open and play around with my insides, so I change irritation into humor. Except the nurse was not laughing. Granted, my humor is of the cynical dry NY variety that often Coloradoans can’t relate too. 
But she pressed on and so did I. When it came to religion, I have often felt deeply personal and private and often put on and pressured by others, so I was primed and ready to be a cynical NYer when asked about my religious beliefs. I suppressed wild thoughts of me on a cold slab, with a flat line on the monitor with a steady tone in the back ground as the surgeons, heads down and dejected as my hernia operation exploded into chaos and a near death situation that they had to call in a man of the cloth as a last ditch effort to comfort me. 

The pre-op nurse asked again, because I was just staring into space, wondering why do they really need to know my religious beliefs? How many men of the cloth did they have for hernia operations? How many varieties? I was imagining Priests, Pastors, perhaps a Buddhist Monk and a Rabbi, all waiting in the hall of the OR just in case my hernia exploded into a near death religious experience. 

She was now clearly getting irritated and then said, “We can put down ‘none’ if you prefer”, rolling her eyes like I was one of those Godless souls running wild in the world. I finally speak and say, “no not that” and I pause again… She is now clearly irritated with me and asks me one last time, “Religious preference?”. I just calmly say, “Snake Handler”. She looks at the PC screen for that option and it was actually in the system! She just selected “Snake Handler” and went on to finish the questionnaire. 

So just before they put me under, they asked me my birth date, my name and my religious preference, just to be sure it was me on the chart getting the correct operation. I dose off smiling, thinking of chaos in the OR as my surgery goes south  and a crazed southerner with a rattlesnake in  his hand and a bible in the other, comes running into the OR to save me, as I get one last laugh.”

 


Losing Friends Due to Illness: The Other Side of the Story

losing friends due to illness

As time goes on, you begin to forge close relationships with people from all over the world who have the same illness as you. These people may be far away, yet nonetheless you share a closer bond with them than people you have known your entire life who live close by. You lean on each other.

And while you might miss your old friends, the amount to which you yearn for the rekindling of your relationship is likely fantasized and amplified in your head.

The truth is, when it really comes down to it,  and worse comes to worst, whose voice would you rather hear on the other end of the phone? The person you grew up with who lives nearby but leads an entirely different lifestyle than your own, or the person you only recently met online who lives on a different continent?

That most of us would choose the latter in a heartbeat says a lot which begs me to ask the question, even if our old friends had continued visiting or calling us, would we not have eventually been the ones who stopped reaching out to them?

In many cases, I believe so. Not because we are rude and most likely not because we do not like our old friends, but because they can never possibly come close to understanding us the way our friends from all over the world whom we met in online support groups can. Just the same, is it then possible our old friends didn’t betray us or leave us, but rather that we simply no longer have much in common with one another?

 

After all, the changes we undergo are in no way similar to the life changes experienced by the average individual.

Ours are rapid and severe, their impacts permanently branding our souls and hearts with igneous iron that entirely changes who we are and endows us with a new set of eyes void of the veil hanging in front of our previous ones.

Perhaps this is the case, the truth at the core of it all, because there is no doubt that illness and solitude forever change us. We will never be the same, we will never be the people they initially bonded with.

They were friends with the old versions of us, not our illness induced reincarnations. They made friends with who we once were, not with who we are now. Likewise, who we once were held a much stronger bond with them than who we are today does.

If you are currently dealing with a chronic illness, or have in the past, can you relate to this? What was your experience like regarding the past friendships once you got Lyme disease or another illness? Post below and let us know.

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Lyme: When the Good and Bad Collide

Sometimes, I wake up and realize that as time slips away, my spirit only seems to follow. In those moments, I find that I miss myself. I yearn to feel deeply again, rather than to feel the numbness from die-off signaling a waking death. I quite forget myself, that the “I” that misses myself is me. I am there all along. Nonetheless, I have become certain the worst thing a person can lose is themselves.

…but sometimes, while I drift into a restless slumber, frustrated from reliving the same day for years on end, a slight smile crosses my face as an acknowledgement countering the one I started my day with surfaces. It is the acknowledgement that I am still here and there is no part of me missing. The best gifts I have ever received have come packaged in the moments I truly believed I was losing myself. The holes that tragedy burns within serve as windows for light to shine through us, if we let them. Instead of losing ourselves, we can learn to instead, simply meet new, deeper parts of ourselves. We are able to meet our true selves at our deepest levels, in our rawest forms. With that, I am able to sleep peacefully, because it tells the plot summing up the most genuine stories of my past: Such fiercely intense beauty can only come as a result of equally intense monstrosities.

Without weaknesses being exposed, constant strength would likely lie dormant as well. If I know one thing for sure, it is that Lyme takes life to drastic extremes, both good and bad. No longer does life reside somewhere in between, and I am fairly certain it never will again. To me, the worst symptom of Lyme is not the pain, the external losses, the seizures, or any other number of things one might guess. To me, it is the numbness that often devours me. The inability to feel is the worst feeling in the world. It’s not depression or anger, even those, at their worst, are far better than the feeling of cognitive dissonance, of floating through life. Because of it, only the extreme can snap me or anyone else with this symptom back to feeling. And out of this numbness, the worst feeling in the world, the best one is born: the ability to fearlessly feel the extreme, to be whipped from one world into an entirely new one, and back again. And it is from this that I have learned:

From life, death is born.

From laughter, tears are born.

From good, evil is born.

From chaos, peace is born.

From joy, sorrow is born.

From prison, freedom is born.

From honesty, lies are born.

From hatred, love is born.

And finally, in death, our souls are reborn.

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