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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I’m terminal in the terminal

I have been traveling. Since I was diagnosed with ALS, I’ve been to NYC – twice, a “local” weekend retreat, and my big trip alone to Seattle and Portland.

What a hot day and night!

My mother-in-law Dot & me in the City!

They were all fabulous – and exhausting! I didn’t bring a camera for all of them. Sometimes it’s nice to just go experience travel and new places. Thankfully, I do have some cell phone pictures although they look like they were shot with a pinhole camera.

Joy on the deck of the Space Needle above Seattle, WA

Pike's Place Market in Seattle, WA

Joy Eats Voodoo doughnut in Portland, OR

Clearly, I had a great time. I admit, however, that I was terrified to travel by myself now that I am disabled or handicapped or whatever the damn term is. I kept stalling to get my tickets for Seattle because I just didn’t know how I would do it. For the most part people were watching out for me. It wasn’t always the airline staff. Chicago airport was not very speedy in getting me a wheelchair to my connecting flight on the way out and on the way back. The flight attendants were getting pissed off at these guys! I only had my walker broken on the way there but not on the way back. I still need to deal with the airlines for that. Apparently they charged me in Rochester a baggage fee when it should have been free!  Oh, and apparently if you take your handicap parking permit to Seattle, you can park anywhere for free! Is it like that everywhere? So much to learn! I was quite wiped out after all these trips so hopefully. I’ll be able to recover from the next one.

Checked off these from my Bucket List!

2. Visit my friend Michael on the West Coast.

10. Be a tourist in NYC. – I went to see a couple great plays on a hilarious road trip to NYC! And I finally saw the Statue of Liberty. She is awesome! Just an incredible architectural statue. Thanks, Dot for that gift!

Next up — December — Disney World!

Springtime in Rochester

Well it’s April 27th and it snowed today. Yep snow. Where the hell is spring?! This weekend it’ll be 80 degrees. So I guess we skip spring and go right to summer. Ugh. I love Rochester, but jees, enough with the friggin’ snow! I put up some photos that I took in 1996 at the Lilac Festival. Oddly, it was so hot there were no lilacs that year! I took pictures of the other things there: tulips, dogwoods, other blooming things. My photog friend, Jill Santi, insisted we take pictures at the Festival. I had this cool Kodak Pony camera that was my boyfriend’s. It was still when people shot FILM. I used to enjoy experimenting with old cameras to see what can turn out from them. That was a throw back to my RIT days. Before digital and the web.

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. }:(

A book started it all

I was at a turning point in my life — unbeknownst to me. My mom & my Aunt Diane were reading these books about simplifying their lives. I was skeptical. I started reading SIMPLIFY YOUR LIFE: 100 WAYS TO SLOW DOWN AND ENJOY THE THINGS THAT REALLY MATTER and I really couldn’t put it down. Now that was nearly 12 years ago and things have significantly changed since then! I dumped my long time boyfriend, moved out, finished school. I’m now married to a great like-minded guy who doesn’t mind that I’m a nut. And we got kids and cats and a house. Even my career has changed. Change can really be made with some simple steps.

Hello world!

Live simply, simply live. It came to me one day while sitting in a hot tent on even hotter blacktop one July. My mom & I were selling my photographs at the Brockport Arts Festival and, well business was slow. Lots of people were walking by having already spent their cold hard cash on a stick with some fabric glued to it. I remember the old Italian guy a few booths over yelling “Cappuccino! Espresso!”