Losing Little Pieces of Me

I could see his lips moving, yet only heard noisy confusion swirling in a stunning blur of jumbled medical jargon. Progressive. Connective tissue disorder. Whole body pain and discomfort. Rheumatoid and erosive osteoarthritis. Thickening and tightening of skin and esophagus. Eventually, perhaps, your organs. Fatal. 

His words hung in the air like the Grim Reaper. I was a 42 year old single mother, given this diagnosis by a callous, arrogant specialist. Scleroderma, CREST and fibromyalgia. I cried. He called me emotional. In that moment that was pulling me through time in agonizing slow motion, my three daughters were my only concern, and how all we had was each other. I was their stability and I didn’t know how to be the sick person, the one who had to scale back, ask them for help. I didn’t know how to show up for me and for them. So I had to learn. And on this arduous road to health I’ve discovered just how relentless, unpredictable and erratic this chronic illness that I wear like a second skin, really is. What he didn’t tell me was that I would also lose my teeth, my eyelashes would fall out, I would suffer tremors and body weakness, I would have debilitating choking episodes, my feet would become extremely painful to walk on, normal wounds wouldn’t heal and my insides would collapse. 

And, of course, I was completely unprepared for how this would affect my identity and self-esteem. Intellectually I know that I am so much more than what’s happening to me and that  like anything in life, the way I respond to this helps create my reality. Yet every new symptom became a battle I had to fight so I wouldn’t be swallowed whole by it. People say not to let this define you and that when you lose something you’re still the same person, but no, you’re not the same person. You are still complete but you are not the same person. Every single loss chips away at you until you replace it with something else. 

Over the last month I’ve become more symptomatic and my high level pain days have been more frequent. Things that were difficult are becoming impossible, which triggered my fall down a rabbit hole. Of fear. Of what ifs. Like, what if my pain outlasts my resilience? What if I already had my last best day? I didn’t used to be so aware of how tired this makes me, how fragile I feel, like my nerves are inside out. For the first time I felt really scared. I’ve dealt with this for years and I know what to do. Most of the time. But all of a sudden I just didn’t know how anymore.

Then my friends showed up. In a million different ways with outstretched arms and generous hearts. Each, with their own brand of magic, took turns lifting me up and providing a safe place for me to come undone. To remind me of the person I am despite this disease, and maybe even because of it. I felt myself exhale and breathe again. There are few things more humbling in this world than allowing ourselves to receive the help of others when we are vulnerable and in need. Even more than the pain that has been the biggest hurdle, and perhaps it has also been the most profound gift. It has cracked me wide open.

I wasn’t always able to accept help because I was wracked with guilt for feeling weak. Inadequate. Broken. Then I found purpose as I began to share my experience and pain. People began entrusting me with their stories of ongoing exhaustion, a sense of isolation, loss of identity and overwhelming need for inclusion. I realized that there’s a common denominator for those of us who deal with invasive disorders and it’s the dark insidious shame we carry that often goes misunderstood. I knew then that I had to write about it. That I couldn’t hide behind my own challenges without giving it a voice. Not for pity or sympathy but for awareness. Together we can help change the narrative and destigmatize chronic illness. We can help people release their shame and embarrassment about going out in public and teach others how to support us. And I don’t mean by wallowing. I mean by owning all the nuances that go with this part of ourselves. I mean empowering ourselves to live our most amazing life within and beyond the limitations we carry. This shit is hard and it won’t be easier by hiding in dark corners and shadowed corridors that dim our light and quiet the conversations.  

The truth is our shame has colored our outlook because we’ve been marginalized by people who can’t understand our pain and by doctors who don’t believe us. We fight guilt thinking that we’ve done something to cause this. We grapple with being a burden on others and finding our new sense of self as we lose things that have been a part of us our whole lives. We push away depression while appearing to be fine on the outside. We simultaneously power through and often feel as though we are disappearing. 

There’s also this truth. We are doing the best we can. Given what we’ve been given. We’re growing our way through. The people who love us would do anything to bring us ease. We’re fucking badass to get out of bed in the morning!

Even though I navigate this well, there’s still a learning curve for me, knowing what to let go of and what to hold on to. Like walking a tightrope, it’s tenuous and sometimes frightening. There’s only one way to the other side and you don’t get there by looking down…you get there by persevering straight ahead through your fear and uncertainty. You get there by showing up over and over, eyes focused on the joy. You do it both consistently and imperfectly. Some days self-care means resting and other days it means plowing through your pain no matter what because if you stop you know your body won’t start again.

At times, I grow weary of not feeling like me, of having to dig deep through the pain to tap into the person I used to be naturally. I know she’s in there. I just can’t always find her. Aside from the physical losses, sometimes I feel my essence fading slowly. Like losing little pieces of me. I miss the optimistic girl that wakes up feeling energized. Singing in the shower. Saying hello to the sun. Being excited about the day. I don’t mind showing up, in fact I love it. I just wish it wasn’t always so damn exhausting.

And yet I know…it could be so much worse. I’m not diminishing my experience, I just understand the value of shifting my perspective. Of appreciating the things I have. 

Today, at this moment, no matter how bad it is I’m still here. And it’s time to just forgive myself for being in pain. For possibly passing this on to my daughters. For beating myself up. For the losses. For being overwhelmed. For being under water.

I’m letting it be okay to acknowledge that it’s getting more challenging, that life looks different. Like it did after my diagnosis and I had to stop, regroup, reorganize everything I’d ever known. This is another shift, not a death sentence. This is a moment of clarity, vision and gratitude for it all. Yup. All of it. And now, for me, maybe it’s about honoring and owning this part. Again. Finding the beauty in it. The acceptance. The surrender. 

It’s a practice. It’s a process. 

At the end of the day the joy in my life outweighs the pain in my body. That is my sliver of hope and my silver lining. 

So I’m going to dance. I’m going to have wine nights and commune with friends. I’m going to attend parties and concerts. I’m going to do good when and wherever I can. I’m going to watch my kids live out their dreams. I’m going to love big, laugh loud and celebrate life with abandon. I’m going to do all of it as long as I can and as much as I can. Until I can’t. That is all any of us can do. 

The moral of this very long story is this, you’ve got to show up in life with grace. For your limitations and for the people that can leverage what you don’t have. For the help you are resistant to receive and the outpouring of love that people want to bestow upon you. You deserve to show up and graciously receive that because you’ve been asked to live with this tremendously difficult situation. You can’t do it by yourself and that doesn’t make you less than. Life is abundant and for every one thing that’s taken, you’ve been given something else that shines and reciprocates the love you’re embraced by. You can choose to believe that and lean into it. It is the thing that saves me. 

Every. Single. Time.