LOVE for ALL

This weekend is a favorite in our house, it is a weekend to celebrate love, self identity and community. The LBGTQ community became part of my life in college when one of my fondest, most amazing friends came out. In my support and love of him, the community and its objectives became a part of me. This weekend I would be one of 1 million in the streets of Chicago celebrating PRIDE; instead in the era of COVID I sit in my apartment and reflect on the profound impact this community has had on me and my ability to thrive with chronic illness.

My gay friends began teaching me in my late teens what it meant to be proud to be yourself no matter what others thought of you. It was the time when coming out was not socially accepted and the ramifications were layered and deep. Seeing your struggles, how you learned to accept yourself and then to go beyond that and advocate for the community has become my template for living. 

I am not going to write all of the stories filled to the brim with deep emotions, and lessons in humanity. After all this is the time to celebrate. What I will say is that there have been countless times over the years when a drag queen has said, “Girl you do you.” Or a random guy said, “You look just fabulous.” Or when someone I barely know noticed I was struggling and offered a kind ear. All the while I was doubting myself, my looks, my worth, my ability. Time and time again you lifted me up by just being you, by your kind hearts and words. 

This weekend automatically makes me think of music. What will be the most popular songs on floats, what is the message and theme for this year? These athems tell stories, evoke emotion, recall memories and spur action. As I write this I am listening to Andy Cohen’s Pride Radio; every morning I listen to iHeart Pride radio. Isn’t that strange as a straight woman in my 40s? Maybe. But the reason is simple, this music has become a part of me, the anthems feed my resilience, energize and give meaning to my day. 

I dedicated Dancing Queen to my husband at our wedding reception. There have been days in the hospital when I played Kelly Carkson and belted out “What Doesn’t Kill Me Makes Me Stronger.” After I got a painful feeding tube, I would walk on the treadmill at a snail’s pace singing Born this Way by Lady Gaga as I started to accept there was no fix for my illness. While these songs and many others are the soundtrack of my life, they also remind me of the good times had at PRIDE fest, Market Days and PRIDE Sunday with people I love and adore.

Pride celebration, the last Sunday in June, has become a day when our friends come together, often from all over the country. We start with breakfast on the street, and celebrate with the 3+ hour parade. Which is followed by reflection and connecting at a 2+ hour dinner afterwards. It is our version of the holidays, we block out the entire day and spend it together relishing the festivities. We exhibit love for people for who they are, no matter who they are, who they love or how they identify. The people we spend PRIDE with are some of the best friends, teachers and advocates anyone could hope to find. 

We see some of you often throughout the year, we see others of you that one day a year.  That sounds like FAMILY to me.

To my LBGTQAI+ family thank you for showing me that it is perfectly acceptable to be me. To be something outside of the majority norm, to prevail and to love myself. To put myself out there truthfully for others like me. You didn’t teach me this on one day a year, you exemplified this in our friendships the other 364 days of the year. 

This is our weekend to celebrate you and all you are. I hope you all know what an example you have been for me, and for that I am profoundly grateful. I would not have prevailed to this point like I have without your inspiration.

Love for ALL.

Now it is time to dance like no one is watching…. Or like it is your own personal, fabulous, fantastical PRIDE parade. 

HAPPY PRIDE!!

Together we go Onward and Upward!

Equal and Opposite

Equal and Opposite

First of all I hope everyone reading this is healthy and safe. In this time of shelter-in-place, COVID-19 and a complete disruption of daily life around the world I have been hesitant to write for fear of being tone deaf or insensitive to others situations. In addition, I was also getting my life together and running again. This type of pandemic virus is something I never really thought about before even with MERS and SARS in recent decades, I was aware that something like this could happen but never realized it would in my lifetime. Here I am just going to share a few thoughts.

Living during this time is hard, we are all adjusting to being home during all of our free time, work time and family time. There is anxiety in just going to get life sustaining food or medication. I don’t know about you but I miss having the freedom to gather with people I love, give them a hug, play with their children and connect in real life. I hate seeing the hurt that sickness and death bring, my heart breaks as I learn of significant human loss with tears streaming down my face. I lose my breath when I think of what might happen to me or my loved ones if we were to be infected. I get angry when I see our healthcare workers, delivery people, food producers putting their lives on the line to serve us in our time of need without the protection they deserve. All of the emotions, the immobilizing, the intense, and the uplifting, they are all part of this process, all part of being human in today’s world.

Even with the anxiety and pain, I am starting to see the lessons learned from all of this. I was completely unaware of all of the time I had been spending doing things I really don’t need to do. Now that I can not do them, I realize I don’t have to spend my precious time on them. I used to run endless errands, I went to appointments that aren’t really necessary, and attended events I really didn’t care to but felt I was obligated. 

Previous to this our lives were filled with opulence and excess. We didn’t need to plan our resources wisely, we could go to the store several times a week. We had an abundance of options of how to fill our free time, movies, dinners, plays, even ax throwing. But now we have to be more conscientious of how we spend our time, and deliberate about who we connect with over a screen. 

This epidemic has given us an opportunity for mindfulness, for intentful living. I thought I had chosen a fairly simple and uncomplicated life before COVID, but now I know I had not.  Now my days are filled with what I value in my life and none of the excess. I have been given the gift of having the opportunity to see the value in things I took for granted, like toilet paper and mid-day walks with my family. I now realize once again, how precious it is to sit on the couch and laugh with the ones you love without the pressures of needing to be somewhere else or doing something more productive. This horrific epidemic has given me the gift of being mindfully present in the moment.

Fortunately, my life with chronic illness has given me the opportunity to experience great loss, the loss of my life and everything I defined myself by, time and time again. COVID is another one of those experiences for me. I spent the last 2.5 years fighting in Cleveland to get back home to Chicago, back to work, back to normal, back to enjoying the city. I once got here and back into normal life it was taken away again. At times I start to get angry with my situation however, I have learned you must feel overwhelming pain to experience and appreciate elated joy. One does not fully exist in the human consciousness without the other, loss and joy, like yin and yang. 

Once we have experienced great pain, our evolution has taught us to do everything in our power to avoid experiencing that pain again. And therefore, out of this global pain and suffering I am certain that we will come out the other side with new scientific innovations, more reasons to connect as human beings across boundaries and have a renewed appreciation for the amazing normal lives we all lead. We will appreciate abundance in life again. After all it is the basic physics law, proven again and again: “For each action there is an equal and opposite reaction.”

We spend several lunchtime breaks a week walking the streets of our neighborhood, cringing at those running or walking too close to us without masks, as we can barely breathe through ours. Those walks have been essential to our sanity, and more importantly inspirational. We have noticed buildings, occupants, and spaces that we have walked by in our busy lives with such a cadence that we never really saw them, or felt their presence. Life has slowed down enough in some aspects that we can actually be present in the moment to absorb in detail our neighborhood and its occupants. 

Our walks have been taking place for almost 7 weeks and with each passing week we have noticed and commented on the length of the line at our local food pantry. We have noted the number and diversity of people in line has increased greatly since week 1 of this routine. We discussed how the pantry must be running out of food, and yet patrons were leaving with grocery bags for their families nicely topped with flowers. What a humane way to help someone in need, with essentials and a touch of beauty. 

On one recent walk to Wrigley field we passed by the Gallagher Plaza and noticed one single news microphone on the brick pavers a few camera men hung around waiting. I speculated with hope that maybe it was the announcement that baseball would go on, just without fans maybe in a neutral location like spring training. Afterall, I am sure I am not the only one that is aimlessly scrolling through the channel menu without sports to watch. Oh that would be so great, I thought.

Then we walked under that iconic marquee and turned the corner at Addison and Clark, there were storage pods lining the sidewalk and a semi-truck parked on the plaza next to the Ron Santo statue. The semi was full of Quaker Oats products from Cedar Rapids, Iowa, being unloaded and stored. Upon closer inspection of the concourse, where you would buy hotdogs and souvenirs on gameday, it was packed full of pallets of food all for the local food bank. A few days later, on our walk we witnessed cars lined up around the block, and patrons lined up around half of the ball park to receive the gift of nourishment. So while many of us miss the crack of the bat and the cheering from the crowd, not having baseball has allowed my neighborhood to have a place to store the massive amount of essential food our neighbors need right now. Another example of an equal and opposite reaction.

While that is my favorite law of motion in physics there are actually 3 of them. All of which can be drawn as analogies to what the world is experiencing at this time (or any time). Thank goodness for science and physics, providing order in a chaotic world. (And for being my favorite courses in college.)

First Rule of Motion: An object will remain at rest or in a uniform state of motion unless that state is changed by an external force.

In that I see my daily life. The way my values had come into conflict with the number of hours in a day and how I was spending them. With all of the unnecessary distractions stripped away I now see the waste of precious time.  So now I ask, what is the intent of my day / week? What are the values that I am going to live up to in that time? Are my habits aligned with my goals, or contradictory to them? The routine of my life was acted on by the external force of COVID-19 and the uniformity has changed, for the better.

Second Rule: Force is equal to the change in momentum over time. (Oh how I LOVE this equation…) In other words, the rate of change is directly proportional to the amount of force applied.

In this I contemplate the sheer magnitude of this pandemic, the sheer number of countries, cultures and people that have felt its effects. I see counties, states and countries working together to find and distribute supplies. I see the researchers across the globe sharing information in real time, forgoing profits for progress. I see accidental discoveries and inventions that will transform our lives all wrapped up in the response to this horrible global situation. The magnitude of this world-wide pandemic will cause wide spread change equal to the magnitude of this crisis.

Third rule of motion (my favorite) : For every action there is an equal and opposite reaction.

This time we are living in, will be one of the most difficult because our nerves are frayed and our lives turned upside down. But by this law of physics there will be just as much positive joy that will also manifest itself in our lives. 

So get ready for the (equal and opposite) reaction.

It is already taking form and it will be amazing. What will our part be? 

Please take care of one another. Be safe and healthy.

Onward and Upwards!

When Your Life Comes Through for You

It was a dreary, drizzly spring day and my surgeon walked into my hospital room, a bit agitated, and asked me gruffly, “What is it you want? Why are you going through this?”

I don’t blame him for being irritated with me. Earlier that day, I had decided I was done, that I would never recover. How could I? I couldn’t even hold up my waning 83-pound, 5’8″ frail frame on my own two feet. Nurses had to come in and lift me out of bed to use the commode in my shared hospital room; it was humiliating. When I tried to stand or push myself up, my muscles just shook; nothing lifted or moved, just vibrated. After a few seconds I would stop trying to move and pressed nurses button.

Throughout my entire life I had been an active person, whether it was running, biking, lifting weights, going to the gym, and now I was incapable of moving my own body. It was depressing.

In addition, I had two tubes the size of garden hoses in my stomach meant to drain my remaining digestive “system,” which consisted of a stomach and less than an inch of intestine. My abdomen also housed two drains used to remove fluid building in my abdominal cavity. How could things go back to normal after this? I no longer felt human.

Over the last two weeks, I had major surgery to remove my intestines, and endured heart and respiratory failure which culminated in a week in the Cardiac ICU. I didn’t remember much of this traumatic event, the drugs were doing their job. My surgeon wanted to know what I wanted out of all of this? I wanted it all to stop, for it to be over, for no more pain, no more frustration, no more feeling like a freak of nature.

But that is not what I said. I instead replied angrily, “You know what I want? I want to go home to Chicago. I want to enjoy the city. I want to wake up in the morning and go to work. I want to come home and spend time on the couch with my husband and my dog. That is what I want every day. I want to be normal; I want to have a boring routine normal life.”

He smiled a great big smile, one that I’ll never forget, and said, “Then that is what we are going to do. And when you achieve that, I’ll come and visit you in Chicago at your office and we will have coffee.”

For the days and weeks to come when I was lying there wanting to give up on the excruciating rehabilitation process, he reminded me that we were going to meet in Chicago at my office for coffee. He always knew just the right time to stop by and remind me of our goal, at a moment I was about to quit some task that was too hard.

Thanks to that goal, I didn’t give up. After two months, I was wheeled out of the hospital and went to my home away from home, Transplant House of Cleveland. I began to walk short distances outside that eventually got longer. I spent afternoons watching the passersby on our porch, envious that they seemed to take going to work for granted. I began cooking again, at first for others, and as my diet increased for myself too. I re-kindled my love for pizza, butternut squash, and cheeseburgers. I learned a lot about the transplant process. I gained weight on my IV nutrition. Day-by-day, week-by-week, I did more and more until I was the one visiting my friends and other patients in the hospital, giving them hope of a life outside of those white walls.

Music is and always has been an important part of my life and my recoveries. I distinctly remember lying on my bed at the Transplant House and hearing “Peace of Mind” by Above and Beyond come on and I felt in heart the meaning of these lyrics:

I lost all the riches
The diamonds in the mine
It turns out that this was the best thing
To ever happen to me
Errors and glitches
And what a way to find
That such hurt can bring you a greater piece of mind

If you’ve ever lost every part of yourself
If you’ve left your heart on a lonely avenue
It will be only a matter of time
Before your life comes through for you.

Finally, I had an epiphany that my life was great and my health stable enough that transplant no longer made sense for me. My family and close friends were hesitant, concerned for my health. But every single member of my medical team agreed, transplant at this point in my life was riskier then living with no intestine, dependent on IV for hydration and nutrition.

I was still a whisper of what I once was, but I was good enough to make the call to go Status 7, meaning I could place my transplant on hold. The risks of transplant, living immune-compromised, and the effects of immunosuppressants no longer stacked up for me.

Eleven months after leaving the hospital, we packed up the U-Haul and I moved back home to Chicago. When I got home, I spent extended periods of time staring out my window at the bustling city. It was amazing how much had changed since I had been gone. I began getting reacquainted with my city and my friends. Life went on when my life seemed to stand still. It was hard work getting up to speed and building the stamina that city life demands. Chicago consumed my efforts for a few months, and eventually it felt like my city again.

Eight months after moving home, I started back at work part-time. After much contemplation, a couple of false starts, and many conversations, it was time to take that step. Going back to work had all kinds of implications. There was a need for a stricter work-life balance than my life had ever demanded. I needed to listen very closely to my body and to heed its message. I also needed to redefine my role in the office. Luckily, we all agreed it would be an on-going process of testing and adjusting to find the right balance. We did it!! We reached our goal.

After having been back at work, I surprised myself; I am capable of much more than I imagined. My fears of being out of touch and obsolete, or incapable of contributing in a meaningful way have all vanished. The energy, love, and support I feel every time I walk into the office is phenomenal. The challenges are precious, and I thrive on them just like I used to. So much has changed and yet so much is exactly the same.

Every day I feel incredibly lucky I get to hop on the bus to commute to a job I love with people who challenge me and support me in ways I cannot describe. During my commute home, I cannot wait to see my dog’s floppy ears and the smile on my husband’s face as we relax at the end of the day looking out over the city. Things that would have gone unnoticed in my busy past are now the only things I can see.

When I say we did it, I mean WE. This would have never been possible without the love and support of so many people, in so many places and at so many times that I cannot begin to even say thank you to all of you.

My dream has come true in ways that I could not have known. I have my normal life back. It wouldn’t be normal to most people, but it is amazingly normal to me. For that, I face every day with gratitude. Everyday, mundane things like riding the bus, going to work, cooking and eating dinner, and walking the dog are amazing gifts for which I will be eternally grateful.

As we open the next chapter, it is my hope that my story can help others hold onto hope when it is only a thread. Although everyone’s path is different, as humans, we must care for the sick, bolster the depressed, help the struggling, and above all, love with gratitude.

Onward and Upward!


Reflections

I have a thing with New Years, the resolutions, the partying, the masses of people, the need to kiss someone at midnight… I hate it all. It is a reminder of time passing, goals unfinished, a year gone, a year older, a year sicker. Too much pressure. YUCK!! BLAH!!

Why do we put so much pressure on one night? Maybe it has been my unpredictable health, one day I would feel great the next horrible, that has conditioned me to never put too many expectations on a single day. There was always a pretty good chance I would look forward to it, plan every detail and then not be able to make it, or spend it throwing up in the bathroom. So I don’t like these events that put too much pressure on one single day.

But my dismay with New Years is more than that, it is also the expectations we put on ourselves for the next year. Not to mention the reminders of those resolutions we didn’t keep from the year(s) before. You see, I really don’t like to fail. So why set yourself up for failure? Resolutions tend to be lofty ideas, dreams really, that we have of what we should be but aren’t.

I found myself this year getting up on Christmas day to the most beautiful sunrise over Lake Michigan. And I found myself contemplating where I was a year ago; I  was in Cleveland stronger but still a shell of my former self. Isolated from my life wondering if I was ever going to be home, healthy and happy. As I remembered my mental and physical state last holiday season I just stood at my window watching the sunrise and cried big tears of joy. The last few years have been hard, but despite the journey I stand here a better version of myself in my home with my family. I am no longer in pain. I no longer spend days sick in the bathroom. I am optimistic about my future (although cautiously). I look and feel like a normal person. I am healthy, happy and at home. My heart wanted to burst, my smile needing a bigger face.

So for the first time as an adult New Years actually corresponds to a point in my life where I do need to reflect and plan for the future. A luxury that I did not have in years past. The gratitude that fills my life is boyant right now; I only hope that I am soaking in every ounce because there is a day in the future I will need it. That is the awkward place where I reside right now, so happy for my current state but leary and well aware that this will not last forever. I am not being a Debbie Downer, it is my reality. And it is the reality of millions of chronically ill people throughout the world. And honestly it is the reality for millions of other people too. All we have is the current moment nothing in the future day, week, month, year or decade is guaranteed.

That reality has me enjoying life, while also putting my health and happiness first. I have really never done that before, always feeling obligated to others needs and demands, slave to life goals I thought I needed to meet. Now starts my priority of self-care and happiness, for real this time. It is also my time to tell my story and use where I have been to inform where I am going and what others will experience along the way.

These are not New Years resolutions, these are my life’s priorities. There is a difference. Life’s direction, values and priorities shift as we learn, change and age. We should give ourselves permission to take the time to reassess when we need to, not when the year changes on the calendar. We should understand that not reaching a goal isn’t a failure as long as we are growing and evolving along the way. Striving for a goal and almost making can still be a proud accomplishment. Changing mid-course can be gutsy courageous if it brings happiness and fulfillment. That is what we should strive for in our everyday lives and not just at New Years.

So tonight when the clock hits midnight, if I am not sleeping, I will be giving thanks for all the progress I have made in health and happiness. I promise to myself that I will continue to grow as a person at whatever pace life will allow. I will encourage myself to make goals and then change them before they are complete. All that matters is that we are going somewhere better than where we are today.

Happy New Year!! Wishing all of you joy, laughter and hope in 2020.

Onward and upward!

New York State of Mind

Hello all. I know it has been a while. There is a list of reasons as to why this silence. I have been enjoying life, traveling a bit, going to concerts and relishing the last nice days before winter rolls in. There have been doctors appointments, a couple of ER visits and nights in the hospital. I have also been enjoying time with my family, especially walking my dog and my friends. My priorities have shifted in a big way. I knew this was happening but I am still taken a back by the magnitude.

In this shift I am struggling to find my voice, to live my life here in Chicago. My old life just doesn’t fit anymore. It would be easy if I hadn’t changed and I could just go back to my life as it was. But the reality is my life will never be what is was again. This is sad in many ways but this is good too. There is no longer room in my life for superficial worries for things that really don’t matter. There is priority to the things like filling my life with joy and surrounding myself with love and giving others hope.

Along with all of these good things I still feel untethered. Floating in the universe unsure of my place in it. So it is time in my life to design a new way of living, a new way of being. Accepting the loss of all of the things I can no longer do; while at the same time embracing my new perspective. This daunting task has silenced me and on some days it has paralyzed me. There have been many days when getting myself together and going out to face to the world is just too much to bare. So I keep myself busy in the comfort and silence of home.

Staying at home doesn’t make me happy, but it is easier than dealing with the stares, the questions, the comments. I am person that draws joy from being with others even if it just walking down the street. The more people around the better in my mind. That is why I loved living in Beijing and Shanghai, cities 2.5 x 3 times larger than New York here in the United States. It is why I always have so much energy when I visit New York city. I wish I could describe the energy I feel in these bustling places, the motivation and inspiration in the vibration of the city for me.

And so when I become paralyzed by my life I think back to my latest trip to NYC, with my Mom for the US Open this Sept. It was a trip I will never forget. Man, we got to see so much tennis, Federer, Nadal, Serena, Osaka, Goff.. is just the tip of the long list. But we still found time to wander the streets, soak in the urbanism that is the city. Something interesting kept happening… people kept stopping me and asking for directions. Everytime they asked I knew the answer, and so I helped them find their way. My Mom and I would look at each other shrug and laugh about it as we continued on.

It was on our way home that I had a realization as to why those people were asking me where to go in a city that isn’t mine. At the airport I was tired and incredibly sore. You see in order to enjoy a day at the US Open, I had to carry with me a special backpack made for IV infusions, filed with cold packs, IV hydration, batteries, pumps and supplies. When I want to be away from a home base for a day I have to take loads of stuff with me. One day I’ll weigh that backpack, but it is HEAVY (and worth it). So my back and shoulders were sore and tired. I decided to get a chair massage while waiting for our plane to arrive.

The masseuse was great a native New Yorker, well versed in energy of the body. One of the best massages I have ever had, he loosened my muscles without a second of pain or tension. We finished the massage and he says to me what part of New York are you from? I said Oh I am not, I am headed home to Chicago. He looked at me shocked and said, well you have the energy of a New Yorker more than some real New Yorkers do.

Click on the images to see full pictures.

This isn’t the first time I have heard this, I worked on a team that had several engineering partners that were from New York. And more than one of them told me the same thing years ago. So I began to reflect….. What does it mean to be a New Yorker?

Does it mean that I am abrasive, obnoxious, rude at times, like the stereo type? Always in a hurry? Am I always intense? (Well this one is pretty close most of the time.) What was it, why did so many people I had only met for a second, or had worked with for years think of me as a New Yorker?

And then I started to realize New Yorkers are tough, they are willing to attempt to live life and even at times enjoy the grind. It isn’t easy living in a large metropolitan city. You have to walk with your life in tow, there is no car to leave things in. You carry your life on your back and you walk to public transportation or to your destination. Hopefully you have some cute yet comfortable shoes on your feet to carry you there. You don’t dare wear sandals, they are dirty and they don’t allow you to pick up the speed you need to get anywhere in a decent amount of time. This walk it isn’t leisurely, you are avoiding city sludge (truly a disgusting pheom), watching for cars, trucks, buses, bikes, and tons of other pedestrians.

It is having to get to work with no AC in the summer or heat in the winter. It is continuing on through the rain, wind, sleet and snow. It is having an awareness of others, their locations and their tendencies that allows you to maneuver quickly avoiding any head on collisions. It is being able to fold the slice of pizza and enjoy it while still doing all of the above. It is being able to successfully navigate the streets filled with millions of other people.

It is being able to find solace in that one moment of sunshine between buildings or in the park. It is finding joy in the chaos that to many is just too much to bare. It is knowing when to stand your ground and stick up for yourself. It is knowing when an argument just isn’t worth the effort and continuing on your way. It is being able to sense dangers and avoid it, like that angry crazy guy walking his bike down the street yelling and taunting people he follows just looking for a fight.

I am sure New York is also many other things to millions of other people. But right now this is what it is to me. And when I read this I realize that I do live this every single day. And I have since I was 15 years old. It is called surviving while thriving. I have had to deal with all kinds of sludgy things in my life and yet I still make it a priority to find joy in the little moments. I live my life with great intensity. So yes I see how I can be seen as having the energy of New Yorker and I wear that badge with honor.

So as I try and find my voice and life in this new state of being I look to my energy and determination to help guide me where to go. It isn’t easy, but when is anything that is easy ever truly rewarding?

It is time in my life that I raise my voice about what it means to live with chronic illness. To be a voice and mentor for those that do not have the confidence or energy to raise theirs. I invite all of you on my next chapter where I seek to educate, break down stereotypes and prejudices and reveal the joys and advantages to living with a rare chronic illness. Let’s start the conversation. Hopefully we will learn, laugh, cry and most of all love.

I look forward to seeing you on the journey! Please let me know if there are any topics you would be interested in reading about related to my situation and/or chronic illness.

Onward and Upward!

Show Me Love – Armin Van Buuren and Above and Beyond. Dance like no one is watching 🙂

Celebrating Accomplishment

Wow!! What a wonderful summer this has been! I can not believe it is winding down and the leaves will be changing soon. As I reflect on this summer it has been filled with fun times with family and friends, a lot of time contemplating and adjusting to what life is now, there have been ups and downs but mostly I see several accomplishments big and small. I have so many reasons to celebrate every single day.

First of all we came to the right decision. Leaving Cleveland, putting my transplant on hold is absolutely the BEST thing I could have done this summer. My team, my family, my friends have all told me how proud they are of my courage to make such a decision. Ha! I wish it was courage that moved me home, but to me it was obvious. It was about my quality of life, my desire to enjoy the city I missed so much, the risks and rewards of transplant that no longer added up.

My biggest accomplishment of the summer was turning the big 40. This one was extra special to me. When I was 15 and was diagnosed with a severe motility disorder of my GI tract my family and I were given a bleak prognosis. The disease would progress, pretty burtally. My digestive system one day would no longer be able to process food. I would go to tube feeds and eventually those wouldn’t work. Then onto IV nutrition and eventually that would loss efficacy and I would die from the complications of the central IV or from malnutrition. I would be incredibly lucky to make it to 30 years of age, so prepare for Bethany to have a short and abnormal life….. And as a 15 year old I thought,”…. this guy, this specialist that is one of the top in the nation, he doesn’t know me and sure as hell as no idea what is talking about. I am going to life to the ripe old age of 40. I’ll show him!” So to me turning 40 is achieving the impossible. I have had a wonderful and pretty normal life until a few years ago. I am now doing great and plan on continuing my life, it is a little different but here I go keeping on.

It is funny how when you are 15 you think turning 40 is the end of it all, life is all down hill from there. But it really isn’t. I feel better today than I did when I was 35, maybe even 30. Although I was much better at hiding it then. I look back and maybe I was a little harsh on the doctor. I mean, all of those things have happened except for the last one as I sit here today very much alive.

So celebrating 40 was big deal to me, but I didn’t want a big huge party. I just wanted a beautiful day at home with family and friends. My best friend, Linda, made the trip from Philly to surprise me. She was the cherry on top of my birthday sundae. Chris took us to an amazing dinner on Friday. The next day close friends joined us for a day out on Lake Michigan and the Chicago River surrounded by blue skies, sunshine and the skyline I call home. It was perfect. Thank you Clint and Andrew for hosting us!! To top it all off there was a beautiful sunset and fireworks over the pier.

A couple of weeks later we got to celebrate my Mother In Laws birthday there in Chicago. Her visit was fun! And then it was Chris and my anniversary, which we celebrated with our favorite Chinese food and an afternoon in the park during which a bird pooped on me 3 times!! All in good luck I am sure. Ha!

In early July I was able to cross off one of my childhood dreams, going to the Home Run Derby and All Star Game celebrations. My mom, Chris and I made a trip to Cleveland for the event (and a couple clinic appointments too). It was an amazing trip that I will never forget.

We have also been getting our fill of street festivals. They are one of the key elements to enjoying a Chicago summer. This last weekend was the Chicago Hot Dog festival, benefitting the Chicago history museum. It was also Market Days the celebration of Boys Town that we call home. We enjoyed great food, music and great people. We got to celebrate PRIDE this year too!

And then the smaller things in life and health. This is the first summer of my entire life that I haven’t thrown up. Sound ridiculous but it is true. It was one of my main issues with my intestines.

I also took my first real shower since Oct of 2015 when I got a central line placed in my chest. With the help of a facebook group of us that rely on tpn for our nutrition, they taught me how to actually keep my line dry in its precarious location.

This list continues on and on big and small. I traveled by myself to Cleveland, and will leave for Rochester soon too. My closet is organized and beautiful! I am finally settled back in at home.

These things have given me such joy that I just had to share. And I also want to say thank you to all of you who carry my soul through all of this. To those that give me reasons to keep going to keep achieving to keep living with a smile on face. It would be easy to let all of this make me eternally upset, grumpy and mad at the world. But instead all of you help me see given the chance I would not change a single day in my 40 years on Earth to date.

It is now my time to move forward with my life and pay it forward to others.

Onward and Upward!

Dance like no one is watching!

I am obsessed with this current remix of Whitney Houston by Kygo.

Thank you all for helping me find A Higher Love!! XoXo

Think about it, there must be higher love
Down in the heart or hidden in the stars above
Without it, life is a wasted time
Look inside your heart, I’ll look inside mine

Hello From the Other Side

Hello from Chicago!! It has been awhile. These last few months have been happy, sad, uplifting, filled with awe at times and disappointing at others but most importantly it has been filled with love and hope.

I envisioned my return home after 14 months away to be a boisterous loud celebration. Afterall we had fought for my life and won, again! I was surprised to find that there was no such thing. Instead of dancing home full of energy and triumph I crawled home tired, ragged and out of breath. When I returned to my life at home I found more comfort in watching my city from my window rather than participate in it. I found solace in just being home in the quiet, our dog curled up in my lap.

Utterly exhausted, that is what I was and still am. You know I have been battling for my life since the day I was born? Yes, there have been times that were easier than others, but I have never possessed a healthy functioning body. Never. Not for a single day of my almost 4 decades on this planet. And it is exhausting.

Wow it feels good to share that. Living with Chronic Illness is a real, daily grid for myself and 40 million other Americans that have to modify their day due to disease. I also wouldn’t change it for a single thing because it is also where I find my strength. It has provided my ability to cope and adapt. It has allowed me to know to take joy in life because nothing is guaranteed. Having another good day of health is a gift that may or may not present itself.

As you know I don’t tend to do anything quietly. It is usually pretty clear where my head is at and where I am headed. So for me to come home and just want to be a silent homebody was just strange. I didn’t know what was going on.

One day after a few weeks at home I started getting the texts, emails…. “Hey how’s it going? You are back in Chicago right?”… My friends and colleagues were also finding this out of character for me. So I tried to go out into the world push back into the old routine. And it was horrible, it made me anxious. I wasn’t having a good time in social situations. It was horrifying. I came home from one outing and sat down and told my husband that I was never going to a happy hour again and started crying.

What the heck was going on?!? I am still processing this. But there are pieces that I have put together. First of all life here went on without me. So I have to get up to speed. Secondly I am different now, I walk around with tubes and bags. I can’t drink… and in Chicago we have a drink with everything. My priorities have shifted. I am on longer chasing the material rewards that don’t provide true wealth. Chicago is different, my friends have evolved, I have changed. It is overwhelming at times. Overwhelming at most times actually.

And then my best friend invited me to the Bahamas with her family for her birthday. There were a million reasons I could have used not to go. Traveling is not easy these days, there is A LOT of stuff to drag along just to keep this girl alive for a few days. I didn’t have a current passport. My luggage had to be tossed a few weeks prior. But I made the effort, and they did too. And it was SO worth it. On that trip I had the realization that I had better embrace what I can do and let go of what I can’t because sometimes you only get 4 days to enjoy paradise with people that you love.

So I am trying. I am attempting to put aside the anxiety, ignore the stares, field the questions about my condition with kindness and celebrate all of the little things I can do. I am tapping into my inner strength to keep my head up and put one foot in front of the other. I still struggle and I find myself with many sleepless nights asking myself the big questions of life. Why I am going through this? What is my purpose now? How much longer can I endure? It is 5:34 am now and I have been up since 3. You should see the sunrise, it is beautiful and amazing, full of such hope and promise for the day. Yeah…. I can sleep later.

But life isn’t the same, and it never will go back to what it was. Life is different now. That is living with Chronic Illness, an evolution of circumstance and ability. And that is ok. Not easy but ok. It is my time to share with the world what it means to live with Chronic Illness, to share my story with the hope that others can relate. That we can all find the strength in it. Sometimes I’ll be dancing to loud music while during others I will be sitting at home with the dog in silence. Both are now equally present and needed in my new life at home.

As I was writing this is the song that came on… dance like no one is watching. Onward and Upward!

Life Goes On (Yes it does, thank goodness)

When you feel like we can't keep tryin'
To make a better way
You gotta hold on

Say you got to believe
You gotta hold on
Cause life goes on

You gotta hold on
Cause life goes on

I woke up at six o'clock in the morning
It was a beautiful day
And I just knew it would be a better morning than yesterday
Sometimes I feel like I just can't get it right
But today I've decided that it's time to live my life

People hold on
Keep it moving
Cause you gotta be strong
Together it won't be long
Things will get better
Cause life goes on

People hold on
Keep it moving
Cause you gotta be strong
Together it won't be long
Things will get better
Cause life goes on

Sometimes I feel like I just can't get it right
But today I've decided it's time to life my life

Delightful Interlude

Life is interesting just when I feel like I have direction it changes course and suddenly I am replanning, improvising and headed on an unexpected course. Life laughs at my desire to exert control over my life, plan it and execute it. I find it frustrating even infuriating at times. But yet my life has provided me with wonderful experiences that I would not change if I had the choice. I wouldn’t change even One. Single. Thing.

After these last few years of life beating me into submission I am trying to let go and take things as they come. It is getting easier and I am becoming better at it. I am even finding joy in what life brings. I have stopped filling my head with endless schedules and obligations, they can reside in my Google calendar and on my Sticky note app.

Luckily, a lot of this development has coincided with me getting stronger and stronger and feeling better and better. And with that embracing my journey and all of the scars from what I have been through.

Years ago at ASU I ran across a book working in the architectural library on Wabi Sabi. I checked out the book and took it home and read the whole thing in one evening, it was short. The concept of holding a worldview where imperfections are beautiful and the incomplete and impermanent can be desirable seemed serene. I loved the idea. And like many things I read I tucked it away in my bank of knowledge of things that exists in the world. Things I should learn more about when life provides the break, the time to do so.

Lately that philosophy has been resonating again. Why am I constantly on a quest to be perfect? To fix everything little thing? And in the process miss out on a lot of the joy of the present…… Why does our society hold perfection in the highest value? From selfies on Instagram to our fancy cars and big houses. We showcase our perfect relationships and only our achievements, rarely our failures. But if we look honestly it is our “failures” that shape us, give us strength and mold our character.

There have been times in my life that I shopped for and dreamed of having some wabi sabi pottery from Japan; where they fix cracks and imperfections by filling them with gold. They are absolutely stunning! Now my primary goal is not to obtain these material things, but to fill my imperfections with 24 karat gold.

Life has been telling me to embrace the unknown and accept love and see beauty in my imperfections. See the world through Wabi Sabi and live life loving my tubes, my bags, my lines and my scars even though at times they cause me pain. 24 karat gold. The cracks are not fault lines, weaknesses. They are beautiful and strong. My life is filled with 24 karat gold. My abdomen must be a gold bar! 🙂

The more I began to accept my current state of being the more I realized carrying my sh*t around in a bag is not that bad. Decorating my tubes can be part of my fashion choices for the day. And honestly most people are so busy and distracted they don’t even notice. Having to connect to a hydration IV bag a few times a day can be just like stopping to enjoy a meal or cup of coffee. Providing breaks during the day that are so good for our mental health. Being on tpn for 12 hours a day is just my reminder not to over do it, take time for sleep and self care. It is what at the end of the day will prolong the good parts of life. 24 karat gold, everyday.

One by one I began to accept who I am and what I have to do to enjoy my life to the fullest. This life I have is not a failure it is an amazing success because there are so many reasons that my life could be over at this point. And it is my responsibility to live it that way for all of the people that have gotten me this far.

This conviction began to grow inside of me, that my life right now is working. I am happy and healthy. My team here carried me back from the edge of the abyss and gave me the ability to hike, bike, wade in the ocean, hug, smile and a million other things too! It was time to embark on a multi-week conversation with my family, friends and my medical team. Was my health and life good enough that I could live like this for a while?

There are risks of living like this… I am well aware. But there are risks crossing the street and driving a car and we all still do those without a second thought. But in my mind those risks can be minimized and monitored, and my medical team agreed!

There are risks with transplant too… and when I arrived in Cleveland my health and quality of life were so poor that we all thought that it was the correct solution at the time. And it was. But embarking on an intestinal transplant is not to be taken lightly. It often does increase one’s quality of life however, it is not the ‘fix’ we associate with a kidney transplant or even a liver. While all transplants are hard journeys with mixed outcomes, intestinal is complicated and unique. It isn’t a failure to not need an intestinal transplant.

Many things in my life have changed in the last 14 months, my perspective of perfection, my health, my energy, my quality of life have all drastically changed for the better. So my medical team, my family and I have decided to embrace this joyful interlude and postpone transplant, for now atleast.

I know a lot of people’s first response is hesitation… concern for my longevity. And I thank all of you for that. It shows a deep sense of caring and love. Thank you!! But really this is a great thing!! I feel better than I have in over a decade. Chris and I took our first vacation where we truly got to escape the world relax and have fun like never before. It was the first trip we have ever taken that I didn’t spend a significant amount of it nauseous and vomiting. The first trip that my health didn’t ruin plans or days of our vacation. I get to wake up everyday and feel good.

My hair is growing back, my skin is healing, my finger and toe nails are growing again. All signs that much like the flowers outside this is my season to bloom and face the sun.

It is with mixed emotions that I pack up our place here in Cleveland and head home to Chicago. Where I will be closely monitored by my Cleveland team and will return for appointments and care. We will take it day by day and week by week, who knows I could be one of the lucky ones that can enjoy this stage of life for a long, long time. One can only hope.

I am looking forward to filling my life in Chicago with 24 karat gold. To share with the world what it means to live like this, joyfully. To support those that are facing similar challenges, with positivity. To take the time to smell the flowers and feel the sun on my face, literally. To incorporate that philosophy I read about so long ago, Wabi Sabi, into my life.

This journey is not over, it has only just begun.

Onward and Upward!

Let’s Dance!!

And the blood will dry
Underneath my nails
And the wind will rise up
To fill my sails
So you can doubt
And you can hate
But I know
No matter what it takes
I’m coming home
I’m coming home
Tell the world I’m coming home
Let the rain wash away all the pain of yesterday
I know my kingdom awaits and they’ve forgiven my mistakes
I’m coming home, I’m coming home
Tell the world that I’m coming
I’m coming home
I’m coming home
Still far away
From where I belong
And it’s always darkest before the dawn
See you can doubt
And you can hate
But I know
No matter what it takes
I’m coming home
I’m coming home
Tell the world I’m coming home
Let the rain wash away all the pain of yesterday
I know my kingdom awaits and they’ve forgiven my mistakes
I’m coming home, I’m coming home
Tell the world that I’m coming
I’m coming home
I’m coming home
I’m coming home
Songwriters: Shawn Carter / Alexander Grant / Holly Brook / Jermaine Cole
Coming Home lyrics © Carter Boys Music

Living in the In Between

As you know I returned from a trip home to Chicago a few weeks ago. I returned back home to Cleveland. Throughout my trip I had an interesting issue, I kept saying how great it was to be home and it was. But in the next sentence I would say something about what I was planning when I got home to Cleveland. It was weird. Unsettling.

Where is home? More specifically where is my home?

There is the saying home is where the heart is…. But I don’t know where my heart is right now. My heart is spending it’s energy wanting, guiding me to a healthy vibrant life. Right now it’s locale is with me wherever I am. With the energy of the universe that is guiding me through this process.

As the week progressed in Chicago I found myself fumbling more and more with my words about the places I reside. It was awkward in conversation, I am pretty sure there were times I sounds like a bumbling idiot.

To exhastrbat the feeling of uneasiness, I continued to feel like a tourist visiting Chicago. The city has changed a lot since I left. Aspects that were normal in my life have changed. The old vacant woman’s hospital is now a huge high rise apartment building. The skyline I memorized out my bedroom window had new shapes from buildings rising in the city. Restaurants have closed and reopened under another name. Coworkers have moved on to other endeavors. Friends children are growing and evolving. Couples have broken up and got together. People that were fixtures in our urban landscape have died. Life has gone on. And it should. But I am still uncomfortable.

On the flip side I have changed, evolved too. Things that were so important to me before this journey began now lack luster. The way I see my life and my role in this world is different and hopefully better. Although I have to say it did make me happy to once again visit my shoe closet. Wearing a nice pair of beautiful shoes still makes me smile, ear to ear.

Other than my shoe closet, it was all disconcerting. I couldn’t find a restful sleep as my mind worried about where I belonged. Then a wise friend of my came to the rescue with one little sentence. “How wonderful your sphere is expanding.” It struck such a cord with me I wrote it down on a sticky note app.

I have been chewing on that notion ever sense. So what my home base has expanded to include another city. I can enjoy the aspects I love of each. Chicago it’s rough edges and fast pace. Cleveland and it’s willingness to survive and make the best of what it does have. Oh and the food in both locales, fantastic! And there are people that I care for deeply in both places and whom give those residences meaning and dimension.

So when I am talking about home, I just use the clarifier of Chicago home or Cleveland home. For now I will enjoy having two homes. I am extremely fortunate. Who knows someday I might get to have three.

Below are some collages of what I have been up to. Right now I am consciously trying to make time for people in my life more that tasks at hand. The goal is to spend time with all of the special people that make my life so great, to be present with them and give them my undivided attention. Thank you all those pictured and not pictured for allowing me to have two places to call home.

Chicago Home

Cleveland Home

Taking a Breath

As you know life on the transplant journey has been a bit intense lately. So I am making a conscious effort to have some fun these days. I am doing so for several reasons first and foremost I feel the best I have in years. I realized that it has been almost 4 years since this long grueling episode began. Secondly I never know how I am going to feel tomorrow, life is in a delicate balance that can be upset any minute. Life has been serious and I have been contemplating life’s questions so a break with some time to have fun and smile is always a good thing. I hope you can join me in taking a moment to appreciate and find joy in as many things in a day as possible.

Here is a little bit of what I have been up to:

Quick trip to the Rock N Roll Hall of Fame

A good way to move on from a dry run is a visit to the Hall. It was a cold dreary day but we went out anyway. The weather must have deterred  many people because we almost had the museum to ourselves. We love the free admission for government employees and their families. The best part in my humble opinion was the pinball machines.

The second trip was with Valerie who spent a weekend in The Land. Finally got to see parts of the museum I hadn’t gotten to on previous visits. We also explored downtown.

Hitting the gym

Making a effort to be the healthiest I can be. Although I am not able to workout with the intensity of the past, embracing weeny weights and slow cardio.

Making A Snowman

One of my friends and former residence here at Transplant House is an Arizona women. So when the snow finally fell we had to have some winter fun. We helped her cross off a bucket list item, not once but twice.

The first day of attempting to build a snowman it was really cold and the snow too fluffy to stick. So the snow was piles and sculpted to create a snowintensity turtle.

The second day with some help of warm hands and a squirt bottle we were able to make a lovely snow woman.

Chinese New Year

Just this past week was the New Year bringing in the year of the boar AKA pig. We went out for a new years feast. Apparently I was too busy eating to take many pictures but there are a couple. I am impressed with Asiatown’s Chinese cuisine.


Cher

My mom was kind enough to get us tickets to see Cher. Dad and I enjoyed singing along to the icons greatest hits with a packed arena. I can check off another bucket list item. Thanks Ma! We had a wonderful evening.


Chicago

As I write this I am cuddling on the couch with Longou in Chicago. I have been looking forward to this most of all. A time to reconnect with the city, my small family and all of my wonderful friends stay tuned for more on my trip to Chicago…..

Onward and Upward!!