IMG_20160217_155331It feels like it has been a million years since I’ve written anything at all, and even longer than that since I’ve written anything about myself that wasn’t just about my health issues. I haven’t even been journaling privately.

I’ve had every intention of coming back to blogging. I put this blog together and created the about page months ago. Hell, I started writing this post eight days ago and never got any further than the words you just read. I haven’t kept up with a memoir-style blog (unlike the half a dozen or so business and cause-related blogs I’ve had) for about two years now. This was the first long break I’d taken from public writing since I first started blogging fifteen or so years ago.

A lot can happen in two and a half years. It’s cliche, I know, to say that it feels like it was another lifetime ago, but in a lot of ways, it doesn’t just feel like it was another lifetime… it actually is.

Back then, I was living in Phoenix with my three daughters, in a long distance relationship with my soon to be wife. I was the picture of good health. Things were far from perfect. There were some major issues. But I had my health and still believed that love conquers all, and I was happy.

There’s no point in going over all of the in-between. It won’t change a thing. Trust me, I’ve done enough of it in my own head to know.

I’m starting here, with today. I am 38 years old. I live in Amherst, MA with my wife and two step kids (13 yrs old and 9 yrs old). I am slowly easing back into work after nine months off due to health issues. Over the past two years I developed Mast Cell Activation Disorder, acute neuropathic pain, and Complex Regional Pain Syndrome. The combination flattened me for awhile, but I’m fighting back. I refuse to believe that I won’t win.

My three daughters (21 yrs old, 18 yrs old, and 16 yrs old) live on the other side of the country. I miss them terribly. All day, every day. I miss them on a cellular level. They are of my body. Parts of my body are missing. It’s no wonder I developed peripheral neuropathy, the kind that’s numb at first, and then leads to horrendous pain.

Today is my baby’s birthday. I am missing her sweet 16, just like I missed her 14th birthday and her 15th birthday. If you’re a parent and you’re thinking you can’t imagine, you’re right. Imagine a longing that sticks in the back of your throat, grief that fills your belly and chest and steals your breath every time something reminds you… and everything in your life is seeded with reminders… well, you’d be closer to how it feels, but not very.

Miraculously, somehow the sun keeps coming up every morning. It feels impossible, but it isn’t.

I send text messages to my daughters every single day and talk to them on the phone whenever they’ve got the time and desire. My oldest daughter responds every day, and our conversations are bright spots that help me keep it all in perspective. We are all still alive, and as long as that is true, there is hope.

I see my family doctor once a month, my physical therapist once a week, and a web of specialists and holistic practitioners as needed. They support me in the work that only I can do, the work of reclaiming my life. This involves doing trials for every single thing I put in my mouth, on my body, or even in my home. It involves desensitization protocols so I can wear socks without searing pain, and can walk to the living room and sit on the couch, instead of spending my days in bed. It means strength training and learning to walk with a normal gait again.

More than all of that, more than anything, the work is in my head. It’s a mindset. It’s determination. Grit laced with joy.

It’s hard work, and it’s worth it. I want to live. I want to live big. Like it means something. Like it matters.

I want to live like I mean something. Like I matter.

That kind of living doesn’t occur accidentally. It takes effort. And it can only happen now, working with life exactly as it is.

This is why I’m here. This is why I write.

 

 

 

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2 thoughts on “

  1. Mani—-thank you for opening the door and sharing all this. It helps me immediately and it will help you (and others). You mean so much. Never giving up on yourself means that your daughters can always find their way home. This is the most important thing.
    But also, never giving up on yourself means Jena will have you to love. And all of us who love you and need you, you will be there.
    And for you, hope does spring eternal, no matter the struggle.

    Like

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