So, it happened again last night. I’m on the dance floor when all of a sudden my body goes weak, I get disoriented and incoherent, I can’t hold my head up, my right side starts to tremor and I need to find my way back to my seat at the bar. Sometimes I can do it by holding onto things and sometimes I need help. Last night I needed help. A lot. In fact, it happened three times and I was kind of a mess. I was just so tired. It’s part of my disease, it looks bad and it is, and it’s also something I know will pass. Eventually. Last night, however, it all hit me a little harder and left me feeling very exposed and vulnerable. I can’t help but feel deep empathy for those who deal with similar experiences so I think it’s important to give this a voice. For anyone dealing with chronic pain or illness, or anyone wanting to learn from it, this is for you.
The thing is, I showed up last night feeling so good and full of energy. I had had a hard day with my body but I felt confident I had gotten through it. So I was unprepared when everything went to shit. I usually know what to do and how to handle this, but I was left reeling. I felt like I had been plunged into an abyss. I’ve been navigating this illness for 20 years, and parts of it are still unpredictable. What works one time doesn’t work the next time. What triggers it one time doesn’t trigger it the next time.
The one constant, is my friends and the people who show up for me whenever this happens. I feel the most incredible blanket of unconditional love and it is all given without an ounce of pity, only compassion. The questions, the concern, the offers of warmth, water and respite are very healing for me. I realized that last night, in my embarrassment I was probably abrupt with some people and for that I am sorry. Not my finest moment. I’ve done this a million times and it doesn’t always get easier. Please believe that your kindness does not go unnoticed or unappreciated, and understand that sometimes I don’t know how to accept the help because my body is not doing anything recognizable. There are times I simply do not know where to put all of this. It’s a lot. It’s overwhelming. All of this intensity is being thrown at me at once. I’ve learned to honor my limitations and take help and that there is no shame in that, and sometimes in the moment, I feel shame anyway. Please know it’s not personal.
I’ve learned so much about myself, and yet, I still lose my way. I have a very intense 2 weeks of work ahead of me and I need to be emotionally and physically strong for what’s ahead. And I’m not. I’m frustrated. I’m exhausted. I’m weak. And when I got home last night I realized that I was also angry and I don’t get that way very often. I never say why me but I do say ‘what the fuck’ an awful lot! I took a look at my anger, let it talk to me and gave it space to teach me. I’m redirecting that energy into feeling strong again.
And I want to give permission to anyone dealing with this to feel everything. For the people who carry the burden of chronic illness and don’t often know what to do with the depletion of constantly lugging around the pain and the deluge of feelings that pack such an emotional punch, I want to tell you that it’s okay to not be okay. I want to remind you again that you have a right to be angry, exhausted and confused by this. This shit is hard. Those feelings are valid.
It’s okay for you to feel. Anything and everything. So go ahead, be angry, frustrated and confused. Just don’t unpack and live there. Process it, listen to it, honor it and release it and focus your energy on the other truth in your life which is this…
There is beauty everywhere. It looks different for each of us but it exists. I don’t think anyone would look at my life and not acknowledge that it’s beautiful and filled with love, laughter and sparkling magic! I’m freaking fortunate. I’m not diminishing what I’m going through by any means, I’m saying perspective really does make a difference. It has the power to shift the weight of the burden I carry. This sucks. It’s dark and it’s ugly. It could be so much better, and it could also be so much worse. I always have that. If you can’t find something, then you reach out to me. I’m really good at finding beauty and silver linings and I won’t let you be alone with this.
I know what comes next for me after one of these flares…3 days of unexplained, intense body pain, and a piercing headache that never leaves me alone. A little reminder that I’m not really well, like I need one. So, today is hard. And it’s healing. It sparks my resilience. It connects me to how much I’m loved. Today I will spend time focusing on self care. I will recenter, reground and reconnect with me. I will love myself through this experience, both the physical and the emotional, with tenderness and kindness. I will show myself grace.
And I will remember this…
Sometimes it’s really easy to resent this illness and everything I continue to lose to it. I’m also glad I have this and not something else. Mostly though, I have a great deal of respect for the things I’ve gained because of it. The insight, the strength. In some ways I feel like one of the lucky ones because my body feels so much, so intensely. It’s constantly giving me clues and signals as to what it needs and I am profoundly amazed at how it keeps showing up for me after everything we’ve been through. It keeps taking hits and yet I’m still standing. That is so humbling to me. It’s taken me to another plane where every moment has become more precious and every little seemingly insignificant thing around me holds wonder. When I am there, in that space of clarity, it transcends the pain and the difficulty. And it brings me back to serenity and gratitude.
