Coming Out Of The Abyss

I have been drowning for three weeks. Feeling dragged under a  current so powerful that I can’t catch my breath. Fighting my way to the surface just long enough to convince myself that I’m really okay…because if I know anything about me, it is that I am strong, I am a ‘get-er done’ kinda girl!! I can kick anything’s ass!! HA!! TAKE THAT!! But about halfway through week two, I found myself running out of things to take hold of, as this remained relentless. This pain, this bouncing between a constant autoimmune flare up, which causes a weakened immune system, still navigating recovery from hand surgery, feeling depressed and overwhelmed, then guilty for feeling overwhelmed when I know other people have it so much worse. And feeling like I know better than to let this get the best of me!! I have dealt with this for a really long time, since 2003, in fact, so I should have all the needed skills by now. But I haven’t had to do it to this degree, every single day without a break, and the energy it takes is incredible. 

I feel it as soon as my body starts to wake up in the morning, the weight of liquid lead moving through me, languid and hot, wrapping first around my neck and shoulders and then into my joints, muscles and through my limbs. The weight of it is enormous, making it a challenge to climb out of bed, to hold up my head. The nerve endings in my body feel like they have all turned inside out, even making my skin tender to the touch. The mundane necessities of living become chores I must do with intention, like walking, which feels like carrying quicksand over the tops of my feet, where neuropathy thrives and bones often feel fragile and as though they will shatter when they hit the floor. Going up and down the stairs requires holding not even as much as a cup of coffee, only the handrails on both sides, sometimes leaning over and using the actual steps to help get me to the top. The idea of wrapping my hand around the refrigerator door handle to pull it open, and the pain that will ensue in my swollen hands, is something I have to prepare myself for every time. Lowering myself to get in my car or, TMI, even onto the toilet, is often excruciating because of the sluggishness in my glutes and thighs. I’m not sure why it settles more deeply in certain areas and lies listlessly in the rest, but once it’s here, it never let’s me forget it’s my annoying constant companion, like a devil on my shoulder, but not as much fun. While all of this is happening it signals my body as a threat and everything implodes. Daily pain and side effects that I routinely live with get ramped up, and recovery from anything becomes more complex, like the common cold I am also currently fighting. Due to my connective tissue disorder, my insides collapsed in 2014, requiring reconstruction with mesh, and any remaining issues with that also have become agitated. Between the pain, the shrill headaches, the unexplained tremors, the fierce severity of it all, it’s been taking its toll. Throw into the mix a healthy case of pandemic loneliness, some upheaval with a few personal relationships, and I find myself feeling emotionally and physically vulnerable.

I don’t deal with life by way of denial, except for those times I really need it, and I just kept thinking, this will pass. It always does. Until it didn’t. I kept waking up feeling like shit, not just sometimes like it was before, but every day, exhausted, hurting and having to plan around it, not sure how I would progress. An amazing beach trip and a social distanced birthday celebration helped lift my spirits, but did little to relieve this mass denseness I’m carrying. Sleep has eluded me, and recently, new unexplained symptoms are rearing their ugly head, leaving me to feel helpless. Scared. Hopeless. I have had no energy for anything but this, yet, strangely, like burning embers inside of me, something was whispering to me that I needed to speak up and write about it. I needed to give life and acknowledgement to someone else’s pain. I was at a loss as to how I would organize my foggy thoughts and most afraid that if I gave it a voice, if I shared this, it would consume me. That I would be swallowed whole in this excruciating vortex of ugliness, weakness and inexplicable, constant heaviness. 

For those of us who deal with any kind of chronic illness there are times when we wonder if our last good day was the last good day we will ever have. And if this is the most we have to look forward to, we wonder how we will ever do it. We’re beyond depleted. I never say why me, but I have questioned if my resilience will outlast the uncertainty of what this disease will bring, like flaming batons constantly being thrown at my body, that I have to catch so I don’t ignite and burn to dust. The sensations moving through me are so visceral that oftentimes I feel my life expectancy is being stripped away from me a little at a time.

This isn’t unbearable. I bear it. It’s just the most difficult thing I do in my life and it takes up more space in my head and time in my life than any other thing. 

And I know, this sounds bad. Depressing. It is. But stay with me, I have a point here, because this has been a catalyst for me…

More than anything else, this illness, layered with its insidious effects, has taught me to listen. It has gifted me with the knowledge that my entire being is equipped to tell me everything I need to know. I am a firm believer in surrender, but in this one area that has been very difficult for me. I’ve been resistant to the limitations that have asked me to slow down, accept help and the idea of progressively getting worse, perhaps dying. I don’t want to be the sick girl. I want to be the strong, empowered, self-reliant, independent woman that I know I am. But in order to connect with that part of myself I must be willing to accept every aspect of what makes me who I am. I continue learning to relinquish control and reach inward, connecting to not only what is living in my body, but to my intuition, my emotional responses, and mostly to my pain, not as an invader, but as an ally I can draw closer and glean knowledge from. Ironically, my limitations feed my strength, and as those pieces of me work together, we create a sense of understanding, build and nurture a relationship of trust so I can navigate the very tricky business of knowing when to push myself and when to rest, when to do things that are difficult and when to step back and let someone assist me. Over the years this has been a tightrope of finding balance between powering through and knowing when enough is enough. I often feel like I have no choice but to stay there, walking from end to end and back, moving with grace, determination, and steadiness as I embrace this offering placed before me. If I stumble there is no net to catch me, other than my own belief in what I know I can do. I think perhaps in life that is all any of us have. We take leaps without a net, we fall many times to eventually learn that we are the reason we get back up again and again. To find ourselves soaring. Thriving. Being okay in a world that is not okay. Or in a body that is not okay. 

Like usual, with this flare up, I kept plowing through, but I told no one, not really, about what else was going on, how this has upended me, sent me into an identity crisis that is confusing me. Making me doubt the very essence of who I am, sucking the life from my motivation and usual ‘go get it’ attitude. It is ruthless, daunting, unforgiving and has been so completely foreign in its constancy that I really didn’t know what to do. It has made me withdraw, feel like I have little to offer, become afraid to reach out and even be a bit mean at times. I was empty. We’d go out and I’d feel uneasy or unsure of myself. I’d find it difficult to make conversation and I’d be very aware of my perceived inequities, like my recently amputated finger. It was as though the illness became me, this second skin and all my demons reveled in the darkness there. That’s not like me at all. Anyone who knows me knows that I am very confident and comfortable with who I am. I’ve done the work. With time and listening I recognized this emotion as shame and that is something I have been intimate friends with and continue to work on because I refuse to claim it as my own when it is not.

It also helped me recognize how much we need to talk about this.

From the feedback I have received over the years, I believe society needs awareness and conversations that encourage true understanding and a safe space to express our fears, experiences and especially victories, making this part of the norm and not something to be hidden in the shadows. As you can tell there are many layers to chronic illness, not just the disease itself.

We are far deeper and more complex than one thing that is happening to us. We are a beautiful combination of all the light and the dark, the limitations and the power, the circumstances that chip away at our identity, and those battles that reveal us as warriors! We are able to harness the energy from everything that is given us and wear it proudly, not just as survivors but as people who thrive in a world with color, life and magic! I Am The Sick Girl. I am also the social butterfly. The dancing queen and the woman who cannot bear weight on her feet. The woman who loves and lives with passion, and the woman who has shattered and rebuilt herself. The girl who gets giddy about simple things. The woman who believes deeply in love and romance. I am both girl and woman, sensitive and frightened, compassionate and struggling, joyful and depressed, broken and kind. I am light, magic and beauty, because that is how I choose to see the world. Mostly I am grateful. For every experience, every emotion, every fiber of life that is woven through my soul to make me who I am. 

This has taken me weeks to talk about, and finally, finally I am turning a corner, and the words just came. And with everything in me I am here to tell anyone out there who is struggling that I see you. I hear you. You are whole, even under the weight of your despondency. It is in the sharing that we see our collective humanity, as we shine a light on our humanness, suffering and our frailties. There are fewer things more empowering in this world than bringing our perceived brokenness to the forefront not to say I am bad, I am shamed or I am damaged, but to say, I Am Here, vulnerable, uncertain and scared, in the abyss of my own suffering, and I recognize you, out there, doing the same. My vow to you is this…

You are not and will never be alone in this world as long as I have a voice.