Lord knows he checked out mentally long ago but I told him to leave physically. I can’t handle his ghost on my couch that stalks the kids and I’s emotional sanctuary.
I have to re-examine my life alone. I have to face the reality that he’s never coming back.
I don’t know where this road leads. There’s parts of me that think it leads right into the treacherous pits of hell. There’s another part of me that thinks maybe that’s where I’ve already been. I’m hoping the only way out is up now.
God knows, I’m crawling and clawing at my surroundings trying to regain my balance and find some foundation to build upon. I’m being careful to not hastily build on quicksand. I’m doing a lot of examination of my surroundings and those surrounding me. I’m taking stock of intentions vs. actions, reaching out more to those that are willing to take action with me. I have no use for lip service. Put up or shut up.There’s work to be done. Lend a hand or get the hell out of the way.
Mostly I’m just promising to love myself in a way that maybe I never have. I’m loving my body and soul. Taking time to care for each. And so, I need to recommit to being here more often and writing more. That’s part of taking care of me. I always show up for my kids and friends. I know that about myself. I love that about myself, however, I need to be more selfish. I need to make time and space for my thoughts and feelings because no one else will, unless I recognize and make them a priority. I’ve given myself permission to have bad moments and days, but not all at once. If I slip and stumble, I will do the next right thing for myself. I will not allow myself to get stuck in these moments and days though. I will continually reach deep down inside myself, or even outside myself if need be, to find the momentum to keep going.
I don’t know where this road leads, but I will keep going.
There’s something about Easter, or resurrection Sunday that makes me reflect on my trials and triumphs. The sweet and the sour. It may be the gospel of just three days separating such a horrific event leading to the most glorious day the world has ever known. Maybe it’s the suggestion that new life can be breathed into even the most impossible situations. Whatever it is I just come away from it … grateful.
For all of it.
The good, the bad and the ugly. No matter what I’ve done or where I’ve been, it has got me here and despite the struggles, looking back through it all is quite a beautiful sight.
It just so happens that I watched ‘Beyond the Lights‘ last night and discovered the perfect song and lyrics for exactly what it is I’m trying to convey.
If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.
Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.
Now, the thing is … I’m not going to get better.
I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.
This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.
It’s just that I have finally arrived at a point in my life that is all about accommodating to realities, living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.
Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better. We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.
“Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA
When you sit in a doctor’s office and are told that the vision loss you have been struggling with is not likely to be resolved, EVER and you realize, no, accept that you are going to have a disability that will greatly impact the rest of your life, you start to think.
My thoughts went to what I could no longer do. Im not gonna drive. Im no longer going to be able to work, at least in the capacity that I am passionate about.
And then my thoughts started to wander to ‘What If’. What if this gets worse. What if I lose my vision completely. What if I don’t get to see my kids grow up. What if I cannot watch my kids get married. What if I never get to see my grandchildren’s faces.
I started to spiral. I could feel the darkness setting in. I had to shut it off. I started to search for any positive, glimmering, golden, small strand of good in this pile of poo.
And then it came to me: What about all the things I couldn’t do when I had a job? The things I missed with the kids. Like at school. Field trips. Days off & winter/spring break.
Ok. This was helping. I was feeling a little better.
Then, as my Mom and I were walking to the car, I saw this girl with this perfectly, dip-dyed teal hair and I smiled. A good, deep down in your soul smile.
Working at a law firm, I could have never done something like that to my hair, although I had always envied and loved it. I decided to pick a fun color and go for it.
I went for purple. And I love it.
My girlfriend who is my hairdresser immediately announced: “Im not fixing that!!!” upon seeing it which annoyed me. I don’t want it fixed, theres nothing to fix.
My Mom asked me if I was having a mid-life crisis.
Ive gotten looks, rolled eyes …
Well guess what fuckers? You don’t know me or my story and your pretentious bullshit can suck it! (smile)
Purple hair, don’t care!
Reminder to self
This little light of mine, Im gonna let it shine!
“The fact that you’re struggling doesn’t make you a burden. It doesn’t make you unloveable or undesirable or undeserving of care. It doesn’t make you too much or too sensitive or too needy. It makes you human. Everyone struggles. Everyone has a difficult time coping, and at times, we all fall apart. During these times, we aren’t always easy to be around — and that’s okay. No one is easy to be around one hundred percent of the time. Yes, you may sometimes be unpleasant or difficult. And yes, you may sometimes do or say things that make the people around you feel helpless or sad. But those things aren’t all of who you are and they certainly don’t discount your worth as a human being. The truth is that you can be struggling and still be loved. You can be difficult and still be cared for. You can be less than perfect, and still be deserving of compassion and kindness.”