Today I am 42

Yep. The cat’s outta the bag. Either you thought I was younger than that  – or you thought I was older. Let’s just say you thought I was younger.

As I was saying… I am 42. It’s been a strange and long road to get to today. Not only the usual being born growing up stuff that people do. Not even the mental growing up that we often are forced into. Not just because I am terminally ill.

On August 8th, 2011 things started to change. I survived a massive  pulmonary embolism.

I’m not being dramatic when I say MASSIVE. It actually was SEVERAL clots. I thought I just had a panic attack. I count my lucky stars that I work with AMAZING people. My two ANGELS know who they are.

I had no idea what was wrong with me except I had blot clots. They gave me oxygen and blood thinner. Scanners for this, that and the other. It took hours. I didn’t actually know what it all meant until I managed to get out of the resident doc.

I am crafty. As soon as I questioned the resident, I grabbed my iPod Touch and jumped on the free hospital wi-fi to google blood clots.

And that’s where I learned why everyone was so grim and serious, including my husband.

As you know, looking up any kind of health problem is scary. I had NO IDEA I was moments from death when I arrived at the hospital.

It’s almost a year since that happened. I was bedridden, had physical therapists, visiting nurses,visiting care assistants, and not a lot of strength. It took until Thanksgiving to realize that although I was regaining strength, I had lost a fair amount of it too.

I had to accept that I wasn’t going to remarkably improve, the ALS was still going to make both breathing and walking more difficult.

It’s just how it is going to be. It’s how it is.

I spent a lot of time showing everyone my strength to help my loved ones and other people who suffer the same fate how great I am doing at carrying it all and being so positive. This is the other side of that coin.

It is hard. Life is hard. Life is hard for everyone. That is truly how I get through my dark times.

It’s hard to think ahead to the next year when I’m not even sure I’ll be here next year. It’s hard to set personal goals or even professional ones when I no longer see so far into the future. Those are part of the life I left behind.

I am finally in the here and now. What motivates me now is what I can do NOW. Right now. Not last year, not next year. NOW.

Happy Birthday to me as I am now!

 

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Woe is me

Now, I’m not trying to get lots of sympathy here. I’m really not! I’d like to think the title of this post is really just full of sarcasm. The rest of the post is not.

I’ve been sick. First we thought it was asthma, then anxiety, then plantar fasciitis, lots of physical therapy (land and pool) but after years of not walking right, not walking up stairs and falling down, I finally went to a neurologist. I get my results from all my testing, supposedly, Monday, March 15, 2010.

I’m more than a bit nervous. Especially today after getting a call from the doctor’s asking if I want to come in TOMORROW and then getting mail form the office as well. Both turned out to be routine type things.

I hadn’t been thinking about March 15th for a while! Although, I KNOW my mom is. She’s praying for me. My mom’s cousin even took a photo of me to the laimas in India so they can pray for me. I’m sure many of my friends and family and even coworkers are all sending prayers in my direction. I’m honored and I thank everyone. Hey, it can’t hurt, right?

Now I’ve been obsessing for years on what MIGHT be wrong with me. Could be a pinched nerve or something like that, OR it could be ALS or MS. Now those last two frighten me. They make me have my life flash before my eyes. I don’t want to miss my kids growing up to be bright strong women and give me grandkids. I don’t want to leave my husband without his partner. I have SO MUCH that I want to accomplish as well. I’m not sure I can bear the news if it’s bad.

I am sick & tired of being sick & tired. I want to know. I need to know. I’m sick of people asking me if I’m pregnant because I’m gaining weight and I walk wobbly. I tired of falling down everywhere where I can’t get up and need strangers to help me get back up. I can’t take care of my house and my family the way I used to. I can’t even run after my 4 year old to play a game of chase.

So for the last 2 weeks, while I wait for this appointment on Monday, I try not to think about it. Or I joke about it. Granted, the meds help. I will take this time to NOT fret and to enjoy the next few days with my family. I will NOT be attached to any outcome.

Practicing Non-attachment

Aside from living in the present moment, this is one of my BIGGEST challenges. How does one DO this? How do you stay grounded by releasing things, people, etc. ? I’m a photographer — I capture. That’s what I do! I was looking at my little girl tonight and trying to think about how to not be attached to her. Impossible! How can I let go this sweet thing I created?

My Little Fairy

My logic tells me that everything ends, as well as life itself, but I just can not apply that to my baby. I can make art and see it go. I’ve moved enough times to see my belongings go.

I’m reading No Self No Problem by Anam Thubten. I saw him lecture at the UU church last month. He was fantastic! I bought his book on the spot. It was kinda weird having a spiritual leader who was close to my age talk about Buddhism! I’m used to old guys who are “wise.” But he was great, down-to-earth, and seemed quite in touch with modern life despite being a month from a young age.

I just finished reading his chapter about non-attachment today. Logically, it all makes perfect sense. But emotionally, I feel like if I let go of someone, like my baby, I need to DETACH. And as far as I can tell, detachment is not the best way to parent your kids. On the other hand, I do practice this with our cats. They are indoor/outdoor cats. We live near a busy street in the burbs. I let them out knowing they may not come back, yet I do love my kitties and I take them to the vets, and buy them reflective collars. I will be sad if something does happen to them, for sure. The best I can do for non-attachment of my daughter is to have no attachment as to who or what she’ll be like. It started that way in the womb. It was more out of superstition — so that the baby would come out ok. All pregnant mothers must go through that. Anam calls it “inner contentment.” He writes that you give up nothing, just your attachment. Again, sounds simple. Not always so simple to do. Or maybe it is and it’s just not so easy to do. }:(