Enduring Darkness

Recently, a friend battling similar illnesses I once faced as a result of the “Lyme complex” called & asked if I ever felt like a loser while fighting Lyme disease & issues related to it, as it is something she struggles with greatly currently.

(*note, I have not had to seek any treatment for Lyme, cos, mold, or anything considered part of the Lyme complex in approximately 5 years, but another beast was born from it which I’ll briefly touch on. If not interested, scroll past the next few lines that are also bold/italic to continue with original story…

Although I have not had to treat for approx 5 years, I’ve admittedly been left with entirely new monsters that have come out of the fog since: autoimmune brain conditions including autoimmune encephalitis from PANS/PANDAS prompted by Mycoplasma —a Lyme disease co-infection— as well as a complex mixture of other incredibly bizarre beasts all causing relatively similar autoimmune manifestations in the brain (I’ve since been introduced to the somewhat rare type of neurology known as autoimmune neurology, or neuroimmunology)

•• To get the big picture, thinking of it like this:

** Autoimmune conditions – many autoimmune issues are from the immune system getting confused and accidentally attacking the body’s joints, tissues etc.

** Immune system & foreign invaders – in response to foreign invaders detected by the immune system, for example, it attempts to fight the invader but ends up also mounting an attack on its own body —usually, or often, with a proclivity towards said attack being aimed primarily at one main body system, the tissues, joints, muscles or an organ like in the case of brain autoimmune conditions.

This is an incredibly simplistic explanation of an incredibly complex phenomenon, I’m aware.

However, for the sake of this post it seems most efficient as it’s not really the main point but I wanted to provide a bit of info on the issue for the curious.)))

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.

*Chronic Illness & Feeling Like You’re Doing “Nothing” With Your Life*

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 truly participate in the battles and victories of her internal wars, and could only maybe —-at best— offer momentary relief by serving as a distraction. Also, simply ten minutes of having one person in the world truly listen without and acknowledge your inner turmoil without judgment for even ten minutes is invaluable. It is the mere moments within those short ten minutes, or however long the feeling of not being alone lasts, that seeds for lasting changes for the better are planted to help us when in our darkest times in life.

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.

As the bacteria continues to evolve, it becomes clear we must do the same.

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.


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