Gratitude

I used to fight change. It was so uncomfortable, unsettling and scary. My life and my being became stagnant. I stopped growing. I was stuck. The last six years has brought nothing but change and I am beyond grateful.

When I had my heart attack two years ago, though, I felt anything but gratitude. I was in shock and disbelief. I was angry. If you could promise me that I will never have another one my attitude toward the actual heart attack might change. But the odds of having another event are much higher than is comfortable. When I think of that I’m definitely not grateful.

Yet when I think of the changes I’ve undergone emotionally, the changes I’ve made intentionally in my life since then, albeit with claw marks still visible, I am amazed. I gave myself permission to leave a job that was emotionally scarring for me. I have grown kinder toward myself. I returned to a job I like, one with less financial stability but more flexibility. I have grown more trusting in the universe that I will be able to take care of myself and my son while living a life I want. I am writing and painting and allowing myself to draw. I am exploring my creative side and asking my literal, controlling, I need it all figured out side to take a break. I am traveling with my son for four months in Europe. It’s a life long dream to get up and go and I’m finally going to explore the world in a way I’ve always dreamed. I am allowing myself to live my life not based on fear but desire.

On March 1st, ,the second anniversary of my SCAD, I am sure I will have a lot of mixed emotions. I was told I got really lucky. Any other vessel in my heart and I might not have made it. But I did. And for that and everything that has happened since, I am forever grateful.

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Trusting in the Future

As of last week I’m no longer employed with the company for which I worked on and off for over fifteen years. You know, the one with great pay, benefits, security. That one. While I have returned to a rehab job I loved but left when I was in the process of adopting my son, it definitely doesn’t have the security. This week I’m working 4-5 hours. It doesn’t exactly pay the bills. But that’s what having SCAD will do. It invites evaluation of one’s life, of priorities and dreams. And if one happened to work in the medical field, it can make it hard to keep doing the same work. Yet there is no one to fall back on, no one else to bring home a paycheck while I figure things out.

It didn’t help that I worked in a hospital. Actually that’s the main reason I had to leave.

Returning to work in the hospital after I was a patient myself was so hard. Every time I passed a room I could feel the loneliness, confusion, isolation, despair. It would wash over me with each step, wave upon wave crashing down upon me. I couldn’t swim against this tide all day. I worked hard to try and come back: lots of therapy, looking at my triggers and moving past them. Then I went away on a trip with my son. And when I returned I realized how hard it still was to be there. I was asked to look again at my triggers. No. I know what they are. I don’t want to struggle and push through them anymore. Person walking by, tied to the IV pole, I can see you clearly now. I can feel you now. And I can’t be here anymore.

 

The New Normal

It’s a quiet visitor, coming by night or day. It doesn’t like giving notice, for why should one be able to prepare. Well, actually, one can’t prepare. Perhaps knowing it’s coming would be worse. Actually most of us know it will come again. It’s pretty unsettling. Knowing that it may and probably will come again. It’s hard, sometimes, to not live in constant fear. Fear of it coming, fear of not really knowing what it means when it does come, because no one can tell us what it means. Take nitro and if it doesn’t get better in five minutes take another nitro and call 911. But I’ve been told that if nitro doesn’t work it means it’s not heart related. So what if the nitro works? What the fuck does that mean? Does it mean it was something serious and so I should go in. Or should I go home and try and forget cause now it doesn’t hurt. Ask ten different doctors and you’ll get many different answers. So comforting. And it comes whenever. Like today. I’m feeling like I’m finally back on my feet, the happiest and most relaxed I’ve been in years. Out of the blue, there it is.

That fucking chest pain.

So I start the mental checklist. Am I having upper back pain too cause I had that when I had my heart attack? Oh wait, but I get the same upper left sided back pain for other reasons. So that doesn’t help. Am I short of breath? Nauseous? Dizzy? Have any jaw pain? No but then I didn’t have any of those either when I had my heart attack. So how do I know? I don’t. Do I go in anyways? Well I’ve had four false alarms since my heart attack. The first two times were after I had my stents placed cause no one bothered to tell me I’d still have chest pain and no one bothered to tell me the heart meds they put me on would make me feel like shit. And then there were two other times.

When you go in for chest pain, they don’t just listen to you and you’re on your way. You’re in there for at least 8 hours so they can do a sequence of labs. And what do I do with my son? He gets so scared when I go in. Of course he does. And the best thing I can do for him if I’m not sure is to go in so I can stay alive. But if it’s a false alarm do I want to go in for an entire day and scare him over nothing? Listening to other survivors, unexplained chest pain is one of our symptoms. So I take a Xanax and breathe and am over hypervigilant about every fucking symptom. And I let a friend know just in case I change my mind and need someone to take my son. And yes my family knows where I keep my will and trust.

People say I’m so brave and good for me that I’m taking off on an extended trip with my son. I have to. I want to spend time with my son. I want him to have memories of me. The research is relatively new but the recurrence rates suck. A couple of people had the nerve to tell me that a 20% recurrence rate wasn’t that bad. I have no history of heart disease in my family. I finished Ironman twice. I have low cholesterol and my arteries look great. I know because I’ve had a camera travel through them. I don’t want to let fear drive my life. I don’t want to sit and wait around for another event. I want to explore the world with my son. And then I have chest pain and I’m terrified. What happens when this happens, and it most likely will, when I’m on another continent, away from my support network? When a friend can’t reach out and give me a hug. When I have to sit by myself with my nitro and my Xanax and hope it’s another false alarm. I’m scared. It won’t stop me from going but today I’m scared.

http://www.heart.org/HEARTORG/Conditions/HeartAttack/AboutHeartAttacks/Coronary-Artery-Dissection-Not-Just-a-Heart-Attack_UCM_454434_Article.jsp#.Vqt7JChOTzI

PS: I wrote this a few days ago and all is well.

Explaining “Traveling with Heart”

I wanted to give a little background as to why I chose the name Traveling With Heart for my blog. Defining what the words mean to me works best.

Traveling: to explore the world, the country, my neighborhood, my heart’s desires and fears. Going inside as well as outside. Exploring foreign places, ideas and the depths of my soul. Being open to new ideas and ways of living and thinking and being.

To visit new lands to better understand places, people, ideas and ways of life. Living to promote my personal growth and that of my son. Helping him grow and learn his place in the world, as a human being, as a soul on this planet, as a kid and as a wonderful, empathetic, energetic soul who will grow up to be a black man in America. Yes I will look at that too. How can I not, as a mother and as a white mother of a black son? As a person of privilege trying to better understand the lives of my black friends and of those who are white who don’t understand their privilege.

With heart: with passion, compassion, love, desire. Also with my physical heart so strong yet scarred by SCAD (www.scadresearch.org/about). At times with fear that something will fail again then with understanding that this may be true but that I choose not to let fear drive my life.

I am grateful for all who join me on my journey.

 

Two Weeks in the Algarve and on our way home

I can’t believe we are back in Lisbon, about to get on a very, very early plane to Stockholm tomorrow. Who booked the 7 am flight? Oh right, me. But before we leave Portugal, I thought I’d catch up on the two weeks we spent in the Algarve.

We spent one week in Lagos, staying at a place which was a bit less than advertised. As I said in a previous post, we had a studio which was of a nice size but a bit old feeling. When we were going to have to switch to a double room which felt two steps down from a Motel 6 and nearly brought me to tears, we moved hotels early. But, while we were there we were very near Praia Dona Ana which was an absolutely gorgeous beach with beautiful rock formations and thousands and thousands of shells. So many one could’t avoid walking on them.

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We had more rain than I would have liked but the days that were sunny were glorious. Junior always found someone to play with and often I had nice conversations with either his new friend’s parents or others on the beach. We went into Lagos a couple of days but the old town wasn’t quite my thing. While the architecture was amazing, the town was geared toward tourists and mostly shops, which doesn’t interest me much. There was a merry go round which Junior rode each day.

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We spent a day using a “train” for our transportation, which was pretty uncomfortable over the cobblestone streets but was a hit with Junior.

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When we moved to Luz, I felt I found my favorite place in Portugal of those we had visited. It was small and not built up like Lagos.

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It was overrun by Brits, so much that full English Breakfast was on all the menus and it was harder to find authentic Portugese food, though I finally managed to have some Cataplana…highly recommended.  The beach was large and was filled with British families whose kids were on school break. So lots of new friends were made by both of us.

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I was able to convince Junior to join me in some early morning walks. Though this meant we were at the beach a bit too long on some days. But it was a lot of fun.

Overall, our time at Luz was my favorite part of the trip. From the smaller, slower town to the large beach filled with kids playing, to our nice hotel room with an indoor pool and gym, it provided us with a wonderful place in which to spend lots of quality time together.

Here’s to more travels with Junior!

We

Our Trip to Sintra

So I’m a bit behind on my posts, not that it matters. I wanted to write some about our trip to Sintra, if only for Junior and me to look back on it later. We actually took this trip over a week ago, the day after we went to Caiscais. I was a bit worried about having two busy days in a row but rain was in the forecast and I wanted to take advantage of the nice weather.

Portugal’s transportation system is steps above what we have at home. And their train stations are amazing.

Train station in Lisbon

Train station in Lisbon

We took the train to Sintra where we took a tour of the Castle of the Moors and Pena Castle. I am so glad we did the trip when we did as I would not have wanted to climb the steps in the rain. Junior was amazing and did all the steps, though I did have to carry him back to the bus. As the Castle of the Moors was built by Muslims in the 8th and 9th centuries, it was a chance to introduce Junior to the basics of the Muslim faith.

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We walked up both sides of the castle and our legs definitely felt it!

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View of Pena Castle from Moorish Castle

We next went to the Pena Castle which was quite beautiful from the outside. We took a tour of the inside as well.

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View of Moorish Castle from Pena

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I had the honor of carrying Junior to and from the castle, and it’s not flat to say the least. But I decided that, on this trip, if there was something I really wanted to do, I was willing to carry Junior if that’s what it took

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We found a wonderful place for dinner, a recommendation from our Airbnb host. Junior liked it so much we went back two nights in a row. Okay, so I thought it was pretty good too.

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Making the Right Decision

So I’m a little behind on my posts and I’m going to go out of order. We are currently staying in Luz, Portugal after moving from Lagos. I had hoped to stay in Lagos for 2 weeks before starting the trek back home but our lodging wasn’t what I wanted it to be. We had booked a double room at a fairly well reviewed “hotel” but I was able to upgrade to a studio without incurring an extra charge so that I would be able to cook meals. The studio was a nice size, but upon checking in there were multiple little things that added up to an unhappy mama. Luckily, the manager was very responsive and was able to make a couple of changes for me. The place was old and had a view of an abandoned building that supposedly the Soviets bought, gutted and left. It always felt a bit dirty and was damp enough that even dry, unused towels became damp. It came advertised as having a heated pool year round but that amounted to a solar cover on top. A bit disappointing.  I didn’t realize how much I wasn’t enjoying our stay there. While we had a beautiful, amazing beach to walk down to, the weather was quite rainy and windy at times, meaning we were stuck inside.

For our last two nights before moving to our new hotel in Luz (pictures looked nice and it had an indoor heated pool for those rainy days) we had to switch to the double room we had originally booked. I wasn’t looking forward to the move as I knew the room would be smaller and it meant an extra move for Junior, who was quite stressed with each move. i was shown the new room and almost broke down in tears. It was dark and dreary, with just enough room to walk around the bed and that was it. Oh, and it was suppose to rain for the next two days. I went back a second time and realized that we just couldn’t stay there. While there hadn’t been a vacancy the night before, one opened up that morning at our new hotel. I booked us an extra two nights, knowing that I was going to have to eat the 66 Euros I had paid for the hotel we were leaving.

I went and told the manager and asked, knowing he’d say no, if we could possibly have one of the two nights refunded. He started off on a story about his business and booking.com fees and I just let him talk and talk. He had a “business” proposition for me. If I would write a nice review for his hotel, provided, of course, that I enjoyed my stay, he would refund both nights’ fees. Well, of course i took the offer though I haven’t yet written that review.

So, I listened to my heart and did what was best for my son and me. We moved to a studio that is almost half the size of my house with a full kitchen, bathroom and ocean view. Oh, and a heated pool. Crazy thing is, this wonderful place is only 7 Euros more per night. We went directly to that pool while waiting for our room to be ready. Best decision I have made so far!