What Cuba Taught Me About Being in the Moment After My Traumatic Health Scare

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Do you ever hear a song and it immediately takes you back to a special place and time? I do with “La Vida Es Un Carnaval” (“Life Is a Carnival”). It is a popular song by the late Celia Cruz, a lady known for her vocal pipes, but also her loud fashion statements and sometimes wigs.

Every time I hear it, the Cuban percussion, horns and her voice, remind me of my travels to Cuba. Over the past three years and almost 15 trips to Cuba, both my Cuban friends and Celia’s lyrics highlight the powerful role of perspective in life, especially when faced with challenges.

Many people ask me, “What is Cuba like? How are the people? Did you ride in one of those old cars?”

Although I smile as I tell my story of riding in a classic American convertible along Havana’s Malecón (an ocean-side boulevard), I also unveil much more about Cuba than they expect.

Old cars along Havana's Malecon

With all politics, economics and anti-Castro talk aside, I believe Cuba has a culture with life lessons for us all. I have witnessed the perseverance of the Cuban people through shortages of water, transportation, housing and limited quantities of toothpaste, diapers and soap. But the essence I’ve taken away from Cuba is the appreciation of the moment. Just as the song below states, there are bad times, and they will pass. It is true that life obstacles come and will continue to present themselves; however, there is and always will be the moment.

Excerpt of “La Vida Es Un Carnaval” translated from Spanish to English:

“Anyone thinking that life is unfair,

Needs to know that’s not the case,

that life is beautiful, you must live it…

… Anyone thinking that life is cruel,

Needs to know that’s not the case,

That there are just bad times, and it will pass.

Anyone thinking that things will never change,

Needs to know that’s not the case,

smile to the hard times, and they will pass.

Ay, there’s no need to cry, because life is a carnival,

It’s more beautiful to live singing.

Oh, Ay, there’s no need to cry,

For life is a carnival

And your pains go away by singing…”

This understanding of being in the moment can be seen any night of the week with plentiful life outside of the home. I’ve seen each and every ocean boulevard or plaza lined with crowds of Cubans of every generation. In my experience, this recipe for happiness repeats itself nightly, only changing ever so slightly. In general, I think the go-to formula is good company, music, dominos and beverages for a good dose of perspective to create happiness.

Why do I feel a connection to Cuba?

Although I don’t have Cuban roots, I feel a deep connection to the two cultural elements of happiness and perseverance. Nearly six years ago, I faced a traumatic health scare after an accident that broke my neck. While I recovered, I faced two other tremendous setbacks: my high-powered career vanished before my eyes as my marriage disintegrated. I lost all I held dear. But I chose and continue to vie for the upside.

Heidi Siefkas With Friends at the Santa Clara Cuba

I share this story about Cuba and my Post-Traumatic Growth in the hopes that those going through health scares, tragic loss or other struggles can preserve and create happiness through perspective.

So as Celia says, “Smile to the hard times, and they will pass.” I would call that a play on our lemons to lemonade, but done a la cubana (the Cuban way), turning limes into
mojitos.

Heidi in Cuba standing in front of a landscape

Originally from small town Wisconsin, Heidi Siefkas is author of “When All Balls Drop” and “With New Eyes.” Learn more about her powerful story of Post-Traumatic Growth, her books and travels on www.heidisiefkas.com.

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10 Unexpected Lessons I've Learned From My Chronic Illness

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When I was diagnosed with a chronic illness, it opened up a whole new world of experiences and perspectives. The effort I had to put into just existing in a society designed for the able-bodied changed how I saw the world. From the moment of diagnosis, I began a journey I could never have imagined, and it taught me lessons I never knew I needed to learn. Here are 10 unexpected life lessons I learned from my chronic illness:

1. People can be both better and worse than you think.

Illness tends to bring out the best and the worst in people. You quickly find out how awesome some of your friends and family are. Sometimes people will be there for you that you might have never predicted. You also find out that having an illness can make you a target for criticism and judgment. You have to develop a thick skin and learn how you’re going to handle discrimination.

2. You are stronger than you think you are.

You never know how strong you are until that moment when your whole life crashes down and you’re left to pick up the pieces. You can do hard things, even when you think you can’t.

3. The human body and spirit has a surprising tolerance for pain.

During one of those most painful experiences of my life, I found myself joking about it with the nurses. It still boggles my mind that I was able to do that while simultaneously wishing for death.

4. There is more to life than being healthy.

It turns out you can still live a joyful life, even though you feel terrible all the time. You will still experience regular ups and downs. You will still have moments of joy and wonder. You can still develop meaningful relationships with the people who really matter. You can still be a good person who makes a difference in the world. Your health is not everything you are.

5. Doctors don’t always know everything.

Some doctors don’t handle chronic illness very well, so if you have a chronic illness, you might come to know more about your illness than your doctor does. The key is to find a doctor who isn’t threatened by your knowledge and is willing to work with you.

6. Laughter can make everything better.

Even at my sickest, as long as I’m able to maintain my sense of humor, I know I will be OK. I believe sometimes you have to laugh so you don’t cry.

7. There are people out there who are experiencing the same thing you are.

There are so many times I have felt completely alone in my struggle, and then I got on the Internet and found thousands of other people going through the exact same thing. I will read someone’s blog post and find myself in tears because they expressed my emotions exactly. Internet support groups can also be helpful when you have a chronic illness, if only to validate your experience and to remind you that you are not alone.

8. Being positive can’t fix everything.

Positive thinking is a coping mechanism, not a cure. Having a positive attitude is often helpful, but it can’t make you better, and there are times when it is appropriate to cry. You can’t be happy and positive all the time. Allowing yourself to feel is important. It’s OK to feel anger and despair, and then move on from those emotions when the time is right.

9. Some things are beyond your control.

You can manage your illness and your body like a pro, but there are always going to be things you can’t control for. Your body is going to let you down at inconvenient times, and there isn’t a whole lot you can do about it. Your doctor is going to screw up your medication and send your health into a tailspin. Your insurance is going to refuse to pay for the treatment you need and prevent you from progressing like you want. These things will happen to you, and it will be frustrating. You have to focus on what you can do and not feel guilty about the rest.

10. This is your journey and yours alone.

You may have all the support in the world from your family, friends, doctors, etc., but this is your journey, and you have to learn to deal with it. You have to rebuild your life around your illness, you have to handle all the ways illness has changed who you are and you have to figure out who you want to be. You can (and should) rely on family and friends for support, but at the end of the day, you alone need to decide what kind of person chronic illness will make you.

Follow this journey on Chronic Mom.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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How to Be Married and Chronically Ill

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Chronic illness is hard. Marriage is hard.

You know what is even more challenging?

Both.

That is not to suggest all couples don’t face their challenges — because every relationship has difficulties. However, there are additional factors in a marriage where one or both spouses are disabled.

I met my spouse in high school. He became my best friend before he was ever anything else to me. We got married six months after I graduated high school. Let me preface this by explaining – a week after I graduated high school I began chemotherapy for liver disease. Four days before I started my treatment, my then boyfriend proposed to me (we had been together for 2.5 years by now), after he’d graduated from BMT for the Air Force. Of course, I said yes! But then we had to go our separate ways for awhile. He went off to tech school and I continued working, started college and continued my chemotherapy.

We married on December 19, 2011, the same day we officially began “dating,” our three year anniversary. Coincidentally, it was also four days before my chemotherapy ended! We have now been married for more than four years and together seven.

Despite this being arguably one of the most stressful years, it has been the absolute best and most fulfilling years of our marriage. It took a lot to get here. The first three years of our marriage were incredibly difficult. For a blink of an eye, I was worried we weren’t going to make it. Not because of my husband or myself specifically; but rather because our entire marriage has been built on the foundation of tragedy and neither of us were poised enough to deal with it in healthy ways. We both came from abusive homes. We both have struggled with depression. I’ve struggled with health issues for the entirety of our relationship.

People said we were too young – I was 18, he was 19. People asked me if I was pregnant, as if that is the only logical reason to marry someone. People rolled their eyes at me. People are ridiculous.

I’ve loved my husband for a long time… even in the really rough years. He has been there for me in my weakest hours. He has fed me, bathed me, held my hair as I worshiped the porcelain goddess, held me when the pain was too much, stayed with me in the hospital after my brain surgery – he has done it all for me. I will be forever grateful for every day I have with him. He never ceases to amaze me with his compassion, kindness, affection and he never stops challenging me to be a better human. I love him more today than I did the day we got married.

Here is the best advice I have for chronically ill patients and their partners:

  • Communicate. This is seriously the most fundamental part of any relationship, not just marriage. If you’re feeling overwhelmed, tell your partner and make a plan to reduce stress/responsibilities so you can compose yourself. If you’re feeling insecure, angry, sad, upset, depressed, attacked, happy, whatever tell your partner. There is nothing too small to tell them.
  • Take care of your spouse. I know this one isn’t easy. As a person with chronic illness, you’re probably relying on your partner a lot – they may even be your caregiver to an extent. This is definitely the second most important rule to marriage if you’re chronically ill. Caretaker burnout is real, and it is crucial to prevent this, for the safety and health of your partner. Make sure your partner is eating, sleeping and getting downtime from you, your illness and caretaking. This might involve asking family and friends for help or hiring some hands, so your partner can have time out. I’d strongly recommend talking to your partner about attending therapy or a support group, so they have additional resources at their disposal (also, you should consider therapy/support groups too; you both need third party people who you can rely on).
  • Establish your boundaries clearly. Boundaries are there to protect you from other people, but also to protect you from yourself – so you don’t ever have to compromise your mental and physical well-being for another person. This can be as small as you not wishing to discuss something if the other is yelling, or as big as choosing to get something like a DNR. And remember, boundaries are a two-way street. There may be things your partner is uncomfortable doing for you, and that is OK. This goes back to the first tip – communicate! You need to talk about these boundaries, or they don’t work.
  • Check-in with your partner every single day. This one is so simple! There are lots of ways to check in – “how are you?” “did you have a good day?” “is there anything I can do for you?” This goes both ways. Ask your partner how they are doing mentally, emotionally and physically.
  • Use words and actions of affirmation/appreciation. You love this person. Make sure they know this and thank them for their efforts in the relationship, and they should return the favor. When I had my brain surgery, I thanked my husband every day for making sure I took my medications, ate and stayed clean. Now that I am more able, I thank him for being so patient with my recovery or for supporting my passions. He responds really well to words of appreciation. Your partner might be a bit different, so you’ll need to tailor this to your marriage individually.

These are the broad strokes of marriage and are fundamental for all relationships – but the chronically ill face unique challenges. Remember, it’s a journey, and some days things won’t be easy. It is OK to need help, to reach out and to struggle. It is OK to be vulnerable with your partner.

This post is dedicated to the most amazing, wonderful and caring person I know. He is my closest friend and my soulmate – my husband.

Follow this journey on salvationisadhoc.

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So You Just Got an Ileostomy: 6 Unconventional Steps to the Next Chapter

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author with shirt that has a semi colon on it You just left the hospital after major abdominal surgery. Your bed is no longer robotically adjustable, no one jolts you from your sleep to give you shots of heparin, and praise is no longer heaped upon you for basic human actions, such as sitting up. Welcome home.

There are a lot of comprehensive guides out there for navigating medical and lifestyle concerns after ileostomy surgery, but it’s much harder to operationalize the nebulous concept of “getting your groove back.” I mean, things are different. You woke up with a new bodily appendage. It can be weird when you remember it’s there, to feel it under your clothes, to explain it out loud to a TSA agent for the first time at airport security.

The following six steps are here because your mission, should you choose to accept it, is to make like a phoenix and rise from the ashes. Life is going to get better.

1. Raid Your Closet.

Your body has changed. Some people are lucky enough to be able to wear all their old clothing after surgery, but many aren’t. If you’re in the second camp, head to your closet and get rid of every single piece of clothing that doesn’t suit you anymore. Having daily reminders of what you can’t do serves no purpose. Sell old clothes or donate them to charity, but make sure every piece you still own makes you feel awesome on the body you have right now.

2. It’s Time to Fix Your Relationship With Food.

Let me put this bluntly: you absolutely did not get this surgery to live through the next decade on saltines and Ensure.

It is very likely if you were sick with bowel disease before surgery you were trapped in a Pavlovian cycle through no fault of your own. Chances are, right now you might not associate meals with pleasure or even positive feelings, and your relationship with food may even limit aspects of your social life. Furthermore, immediately after ileostomy surgery, you’re likely put back on the all-too-familiar “applesauce and toast” diet, which reminds you of a ragged old pair of pajamas: familiar and comfortable but not doing you any favors.

When your medical team says it’s OK, expand your diet from your “safe foods” a little bit at a time. If you’re nervous, you don’t have to overwhelm your system. Try a few bites of something new and eat slowly. Wait for a pain that never comes. Repeat.

If you’re finding that fear and anxiety remain a hindrance to nourishing your body long after the physical pain subsides, think about talking to a professional. No need to be embarrassed; you’ve been through a lot, and there’s no shame in doing absolutely everything in your power to get healthy.

3. Do Something Nice for Someone Else.

Colectomies are not given out recreationally. You have been very sick and, potentially, unable to care well for yourself, much less others. It’s hard to be truly empathetic while experiencing great pain, and when energy is at an absolute premium, most of it is expended in survival and self-preservation. Believe me when I tell you that as you heal, acts of kindness will feel amazing.

Start small; you don’t even have to leave the couch. Send a nice Facebook message to someone you miss. Call up a friend on the phone and ask about his or her day. Send a written card to your grandparents. When you’re up to it, you can try to step it up a little, like baking a treat for a neighbor or friend. Try volunteering for an hour or two.

4. Find a Role Model.

Although it may feel like it right now, you are absolutely not alone. There are millions of people worldwide who have an ostomy, and chances are, there are more than a few like you. Find a role model, someone who rocks an ostomy with confidence and lives a life you admire. Model your attitude after theirs, and although it will seem a little “fake it to you make it” at first, I promise you that genuine self-acceptance will follow.

A quick YouTube, Tumblr or Google search will bring you a host of options. Just so you know, my ultimate role model would be a combination of Blake Beckford and Rupaul.

5. Get Out of Your Bed.

During the first few weeks after discharge, home is absolutely where it’s at. You were likely too tired and weak to do much and easily entertained by movies or TV. However, as time passes, you might find that you’re getting restless. Even if you’re not strong enough to do too much yet in a physical sense, make every effort to get out of the house, or at least out of your bed, at least once a day. Sit at a café and read or take your laptop. Accompany a family member on an errand. If you live in an apartment building with a common room or lounge, camp out there for a few hours.

If you’re nervous about leaks (which pretty much everyone is at first), bring extra supplies and even a change of clothes if it gives you comfort.

6. Keep Medical Care Regular.

I do not care how great your inpatient care team was and how many times you’ve practiced putting on your bag. When you leave the hospital, you’re an Ostomy Amateur.

There are so many variables at play here. Your stoma will change quite a bit in the weeks following surgery, your abdominal swelling will go down, your weight may change, and your activity level will steadily increase. Plus, skin issues and leakage are very painful, both physically and even potentially emotionally, when you’re just getting used to having an ostomy in the first place.

I understand you’re likely very tired of going to the doctor, but be proactive in getting as many check-ups in the first few months as you can until you’re absolutely sure you have the hang of things. Wound, Ostomy, and Continence Nurses (WOCN) are amazing people, and they can prevent small skin issues from becoming major problems. Many medical centers offer home care after surgery, and others have WOCN staff in the office.

I hope these tips, while unconventional, still prove effective. Congratulations on making it through surgery; welcome to the other side!

Editor’s note: These answers are based on personal experience and shouldn’t be taken as professional advice. Talk to your doctor before starting on any medication or diet.

 

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5 Reasons This Year’s TEDx Syracuse Theme Is the Best, Biggest ‘Glitch’ Ever

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I had my first TEDx rehearsal this weekend. It was a great chance for us all to orient ourselves on the amazing concept of TED’s “ideas worth spreading” and work out our own “glitches.” rehearsal for TEDxTalk in syracuse

 In fact, the theme of this year’s TEDx at Syracuse University happens to be… Glitch. meme that says TEDxSU Glitch Conference April 16

 What would you define as a “glitch?” Here’s one dictionary definition:

1. suffer a sudden malfunction or irregularity.

2. a minor problem that causes a temporary setback

I think the better question is, who hasn’t had a glitch in life?

I’d define a “glitch” as a detour — you know, something in life that doesn’t go as you expect. Nobody expects a detour to happen. It’s what happens when we think we have things planned and all figured out… and then we’re thrown a curveball. I’m excited about the “Glitch” theme for this year’s TEDx. What is life without the imperfections, the “malfunctions” and “irregularities” to keep us on our toes and push us to learn, change, adapt and grow?

We all experience glitches in life. Here are five reasons why “Glitch” might be the best TEDx theme ever:

1. Glitches give us a chance to revisit and revise. When we spot an “imperfection,” we’re forced to pause and give it more careful thought. We’re challenged to work on something we might have glossed over or might have easily overlooked. Glitches demand attention, a different approach, a new way of problem-solving.

2. Glitches give us character. In a world of sameness and uniformity, it’s the mistakes that are our uniqueness. Our “flaws” allow us to stand out. A glitch is individuality — a mistake that’s unmistakably you.

3. Glitches make us who we are. What glitches and detours force us to do is explore new opportunities. When we can’t go in the direction we anticipated, we’ve got to switch gears and adapt. We have to resource inner strengths we never knew we were capable of accessing. When we achieve the “unthinkable,” we discover who we really are.

4. Glitches make our stories. Think of a favorite adventure movie. Every good plot has an unexpected twist of events. If life went exactly as you planned, where would the excitement be? The best stories are the ones with surprising “glitches” and turns. Glitches lead to discovery, epiphanies happy accidents. Did you know potato chips were invented by a glitch?

5. Glitches connect us. We all have things in life that don’t go as we expect. We all make mistakes and experience “failure.” The more we share our “glitches” the more we realize we’re not alone — and there is strength built in community. A world of “glitches” is a world of uniqueness, empathy, compassion and change. Bonus reason? Glitch is a pretty fun word to say.

Glitches have an upside. Glitches allow us to welcome the unexpected change in our “thought-out” life and see what opportunities may arise. I’m living proof that a glitch can lead to unexpected blessings. If I took away all of the setbacks, hurdles, frustrations and glitches, I wouldn’t be who I am today… giving a TEDx Talk on glitches. Glitches are most certainly happy, liberating and open-ended discoveries. How can you make a “glitch” today? TEDxSyracuseU tweet introducing Amy

See you at TEDx! Amy will be speaking at TEDx Syracuse on April 16, 2016. Learn about her mental health advocacy programs for students, and find out how to take part in the #LoveMyDetour movement, striving to create compassion through stories.

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How I Turned a Television Viewer’s Comments on My Body Into a Life Lesson

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author in front of green screen You have to grow a thick skin when you work in the television news business. As we are reporting the news, thousands of people at home are watching, and those select few are judging us. Just this week, a viewer commented on a story I covered about a program teaching families how to cook healthy meals. Instead of remarking on the video, the viewer looked at my headshot and wrote, “She looks like she eats healthy,” adding an emoticon to show that he was being sarcastic.

While he didn’t flat out tell me, “You are fat,” he implied it, and it’s not the first time I’ve heard that. People get creative when they want to criticize, using words like “lumpy” to describe my figure. Instead of the word “ugly,” I’ve been told I have “below average looks.”  The criticism is something I’ve become accustomed to over the years, but a decade ago, comments like these would have brought me to tears, and I would have spent days fretting over the fact that people didn’t like me.

I get it. Criticism comes with the territory. Do I enjoy it? Not unless it’s constructive. But, it’s part of the business I signed up for. These days, I’m older, wiser and jaded, so I know how to brush off the comments. I know I am not a blonde supermodel, and I know I’m not considered “thin,” but I’m healthy, and that’s what matters. I will never be a size 2, but I don’t think there is anything wrong with my size 8 figure. Even between working, being a mom and blogging, I still find time to cook nutritious meals and work out. Sometimes I wonder how I get it all done!

It’s been a few years since I have received a mean body image comment. As I read the negative feedback, my heart sank. Not because of the mean words, but because of what the future holds. I thought of my daughter, Peyton, an innocent toddler who thinks the world of me. I didn’t grow up with the internet at my fingertips, yet that is all my daughter will know. People can easily hide behind their computer screens and throw out hurtful words, all while staying anonymous. And to be honest, it scares me.

So how do I make sure Peyton grows up full of confidence? I simply show her. By loving myself and every curve and dent, I’m showing her self-confidence. In the past five years, I’ve endured several surgeries, carried triplets, and recovered after nearly dying following the birth of my children. I’d say my body is pretty amazing! It may not be perfect, but I’m comfortable in my own skin and I want my daughter to see that. Every morning as we brush our teeth, I hold Peyton in front of the mirror. We look at our reflections, and Peyton smiles as I tell her she’s beautiful. It’s never too early to start teaching our children to love themselves.

It’s taken me years to grow into the person I’ve become, and I’m proud of how I have evolved. As for that nasty comment? A simple phrase from my childhood comes to mind: Sticks and stones may break my bones, but names will never hurt me.

author with daughter smiling

A version of this story was originally posted on Her View From Home.

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