Welcome!

Us

Us

Thank you for joining us on our quest for Tristan’s wellness.

For those of you who know us, you may be feeling sad, confused or overwhelmed about how to be supportive during his latest medical experience. What we ask of you may seem simple, but it’s actually quite challenging: we ask that you seek out joy and gratitude for your life, for the lives of your friends and families, and for us. What the world needs is more people who live each day with joy and humility instead of sadness and anger. So, we just ask this one thing of you: please be well.

Some of the updates on this blog are not happy, some are emotional, but ultimately it is an honest depiction of our lives as we try to figure out how to navigate through something most people under 30 will never have to go through (thank heavens for that!). We don’t know what we are doing, but we are doing it. Thank you for sticking with us through the unknown future.

A little bit of background

Tristan’s kidneys were damaged when he was three years old, and the 26 years since have been a roller coaster of health challenges that have nearly taken his life more than once. At present, Tristan has his second kidney transplant scheduled at Stanford Medical Center on November 18, 2015 (the transplant has been postponed to January 13, 2016). We have been keeping this blog since 2014 when the latest medical crisis turned into two hospitalizations and dialysis, and we will continue to do so through the upcoming transplant.

Explore Tristan’s full journey to date for more detailed info about his medical history and current situation.

Read the latest posts to keep up with the latest news and thoughts from us.

Our stories…

Tristan

Tristan

I’ve always had a really hard time being open and communicative about what I’ve been dealing with in regards to my health. Because this all started when I was 3 years old, I’ve internalized a lot pain, anger, and suffering, and I’ve unconsciously defined my life by these complications.

Being a person is stressful enough – growing up, going to school, college, working, paying bills, being in a relationship. Life throws a lot at you – lots of good things, and sometimes lots of challenging things. For me, and many others who have dealt with serious health issues, it sometimes feels like there is a dark cloud hanging above your head through everything in life. It sometimes feels impossible to think about anything else besides what’s going on inside my body. Specifically, what’s wrong? And how can I fix this? Am I doing the right thing? It’s stressful and draining at times, and often leads me to feel depressed and depleted of energy.

But I do not want to define myself by these things anymore. I want to get through these challenges that I’m now facing and find a way to truly heal, whatever that may mean. Facing something like this with someone you love is both amazing and heartbreaking in its own way. It’s amazing because the love and support you get from your partner helps you stay positive, and the comfort and compassion they give you cannot be replaced.  The heartbreaking aspect is observing your partner as they watch you suffer, and knowing that they are vicariously experiencing that suffering too.

Thankfully, Alisyn is the most amazing partner anyone could ever ask for. Because I love her so much, I see that I have to do things a different way this time – it’s impossible to keep all these thoughts and feelings to yourself when you share your life with another person. I feel more motivated than ever to transcend this situation, learn its lessons, and live my life as fully as possible. Even though things are a little crazy right now, I know they will get better, and I know Alisyn and I will get through this stronger than ever.

I hope that by sharing our experience through this journey we can give inspiration and hope to others, regardless of what they’re going through.  It’s important to me that my friends and family are able to be a part of this journey with me, because this time it feels so much better to be open and honest about what I’m going through.  My goal is to learn as much as I can, document what’s happening, experience the healing that I need, and grow as a person.

Alisyn

IMG_2656When you love someone, their pain is your pain and their struggles, triumphs, and decisions are yours, too. This is the situation with Tristan and me. After sharing our lives together for over 7 years, there is no his and hers … it’s ours. All of it. Meeting and loving Tristan has changed my life, and though no 29 year old should be dealing with this, we are, and it’s nothing if not humbling. There is nothing more serious than life or death, yet here we are, embracing and living life with everything we have.

As a person who has not grown up with a chronic illness or health problems, the medical world is a mostly foreign place to me. I consider myself pragmatic–the yin to Tristan’s yang–but the medical system is trying for me, too. It’s really messed up, to put it bluntly, and it’s not an easy world to operate in when you are dealing with crisis. Still, with all crisis and struggle comes peace and strength. I hope you will travel along this journey with us, and even provide insight into your own experiences to help us on the way.

Expectedly, I would give anything to not be going through what we are dealing with, but unexpectedly, I am filled with gratitude for this gift of perspective. Here are some pieces of the perspective I’ve gained:

  1. I didn’t realize I was equipped to deal with something like this. I am.
  2. Those little things that brought me so much anxiety and stress before really don’t matter at all. The small moments of joy and triumph are WAY more powerful than little moments of worry.
  3. The act of loving someone so much that you wish you could trade places and take away their pain is real, and it’s unlike anything else you’ve ever felt. It changes you.

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3 thoughts on “Welcome!

  1. You are so right and full of wisdom (as always), Kasandra! I don’t know what I would do if I did not have your guidance and learned experience to pull from during these times. The parent/child relationship can be a tricky and weird one, but I am so incredibly blessed that Tristan’s parents are so supportive and loving to both of us. Thank you for being a solid foundation that we can both rely on when things feel so overwhelmingly hard. Love you.

  2. I believe I am learning so much over the years … and looking back, I’ve learned the most when I really did not want to–when I secretly imagined I could hide out from the chaos of uncertainty. Someone once glibly said to me, “well, all of this difficulty really builds character” to which I replied, “Thank you, I have enough character, I could do with less upset or challenges that make more character!” But of course there is no hiding from that which we are presented with. That is a hopeless cause. And it becomes apparent that something is needed to be learned, if we but openly face it and walk into it. yikes! I believe learning is so important, but it can feel scary, too.
    The venerable Tibetan Buddhist meditation master Chogyan Trungpa Rinpoche said something like ‘ Oh! your life is in chaos? Excellent! you are about to experience change (or growth).’ And I think that is true. It certainly matches my experience– that growth or positive changes in me happen slowly when I am more resistant (hide away) and faster if I am less resistant (go for it or “let go” for it).
    So, in my long way of saying it, Tristan, I think that your choice to face your current well-being with one present-tense, here and now, foot after the other will be to your benefit in the chaos of changes ahead, you will see your choices before you and act on them, and then you will see the next thing in front of you and its choices and so forth.
    Here is what I say to myself all the time: Breath, try to smile, open your eyes, be tall, go.
    And the fact Alisyn, that you have not been practicing some of this dance as long as Tristan is not a bad thing, because both of you are making a brand new dance together.
    And so great that you have each other…..
    much love

    • Kassandra…don’t know if you’ll remember me or not…probably. Your story (and Tristan’s) are an inspiration. My belief system says that if we are presented with such challenges they are meant to enlighten and strengthen us…I feel this with you. We used to have wonderful, spirit-filled conversations about our children and where they were headed. Mine are doing well…on their own journeys…as intended…and I on mine. I am feeling pretty emotional about this latest challenge for Tristan, but know he has the support and love of so many…Best to all of you…Diane Walter (Ray)

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