Mariposa Climes Project Update 2016

To catch everyone up that may be new to this, I’m going to share the backstory first.  Then I’m going to outline what we are doing, where we are at, and the current state of the Half Dome hike project.

A little over a decade ago, I was planning a trip to Yosemite with my family.  Having stared at Half Dome most of my life, and seen pictures from when my father hiked that trail, I decided that I wanted to take it on.  A documentary I watched included someone hiking Half Dome on their 70th birthday and I decided I can certainly do that for my 40th.  I was working towards that goal, getting back into fit shape for it (I’ve been camping and hiking my whole life but this is a big task to bite off), and then a tremendous health crash hit me.  My health has never been fantastic, and I’ve always had issues to manage, but this was the worst slide into dysfunction I’ve ever had and a place I plan to never end up again.  Systemic Lupus, among other things emerged.  In 2007 when I was turning 40, instead of making arrangements for that adventure, I was recovering from not being able to even stand up most of the year before.  The previous 2 years when I would have been training, instead I was battling incapacitating pain without any answers as to why.  In my 40th year all I cared about was being able to walk again.  I’d been left without any hope of EVER hiking a trail again.  To be honest, I’d given up.  That’s the dark pit I talk about sometimes.. and climbing out of it was not easy.  It took everything in me to regain myself, motivation to live, desire to fight, and the center to find any belief that I could take care of myself again – without being doped out of my gourd on medications.  It took me years to get back to a point where I could even consider this trip again.  I was fighting first to just be able to stand in the kitchen and cook myself a meal… to be able to drive my car… It’s all the things most of us take for granted until something this catastrophic hits.

A little over two years ago I realized that the personal changes I had made were making a bigger difference.  Bigger than anything any Dr had said to me or offered.  Between SLE, Fibromyalgia, and then the diagnosis of a heart condition, I was more afraid of what NOT doing something could do to me than doing something.  I live with a lot of pain, for anyone that doesn’t know this about me.  I have always had pain, even as a child, but it’s my normal.  I’ve never known any other life.  While most of my friends in the Lupus community are talking about wishing to go back to who they were before, I don’t have that clear of a distinction.  The difference for me has only been about whether I was young and strong enough to power through it like I used to.  I’m not anymore.  Now I have to adapt and take special care of my body so that it doesn’t turn on itself and try to kill itself.  That’s what it boils down to.  Autoimmune disease means your own immune system is the enemy.  It attacks healthy systems in the host body.  They suspect that’s why my heart is damaged.  I say I am fortunate that’s “all” that is damaged… and people look at me funny, but hey it’s controlled with meds now.  My kidneys aren’t failing.  I’m on my feet.  I’d call that fortunate and blessed.  So what I did was I started walking again, pain and all.  I started walking to the end of my block and back.  I kept doing that till it was easy, and then walked it twice, and then three times… and you know if you follow me that I went on from there to much more.  I decided along the way that I still want what was taken away from me.  That opportunity – and I have missed so many, especially during the decade of being so very ill – was still MY choice.  I gave myself 4 years to train.

This is still first and foremost a personal goal and a family trip.  This is something I am doing with my brother, because we missed a lot of opportunities to do these things together over the years as well.  It’s also more than that now, and that’s why it has become the project that it is.  Since the start of this I’ve been making videos of various types, and blogging, and running Facebook Pages for information and community support.  This is both to educate the public about rheumatic autoimmune disease and women’s heart disease, AND to teach those within the community that the diagnosis does not mean your life is over.  I have proven in my own life – as have a few of my closest friends – that making food your first medicine, and fighting to regain physical activity, makes a world of difference in quality of life for us.  Catastrophic illness takes a person down mentally and emotionally as well as physically, and it’s a full-on war… Adaptation and a life of no excuses is the only way to manage it.  That’s a hard message to hear for some people.  It took me time too. I am tremendously grateful for the support I have from my brother, my friends old and new, and even people that I have only talked to in passing that have offered words of encouragement.  There are days when that is needed more than you know.. because this is scary.  Really scary.  It’s also more exciting and important than I have words to describe.

I am taking on this hike (and all the others I’ve done and will do) not just for myself but for everyone that it’s just too strenuous a task for them to do it.  I carry them in my heart and bring back the images to share.  I also do this for the friends I have lost to this disease.  There are days when I look at photos of Kymira Jones and wish she were still here cracking jokes with me, keeping me giggling.  I do this for the future diagnosed who will walk into this as bewildered and exhausted as I did 6 years ago, trying to understand a whole new world of terminology and information that is simply overwhelming at times.  I do it to hopefully inspire someone else to take back their life or at least pieces of it, and find their way back to themselves.

That’s what Mariposa Climes is.  It’s about transformation and rebirth, adapting into something new to survive.  It’s about a climate of expectation of that renewal, and creating an environment that leads you into a new beauty.

I started 2016 badly, to be right to the point.  I got through Winter better than the last and stayed somewhat active and then I got sick Christmas Day with a cold.  Then when I was back on my feet from that I got slammed hard by Influenza A.  I’m still coughing.  I went through more pain with that than I can describe to you and I’m just glad that part is over… so now I’m fighting to recover again and get my lungs right.  I am training with Fall 2017 still in mind but allowing a buffer zone.  IF… big if… but just if it is absolutely necessary, we will bump Yosemite to Spring 2018.  I won’t keep that in the forefront of my mind because it’s not my first choice.  It’s just there if needed.  Prayers and positive thoughts are welcomed and appreciated.

The only invitations I have given at present outside of my family are to two people that I know well enough to know they are fit and can be trusted.  Holland, my best friend of over 30 years who has been like a sister to me, and a newer and dear friend, Lisa (and their spouses of course if they are available and so inclined). I am about to extend the invitation to one other person that I have known a VERY long time as well.  I’m not taking requests from people to join in even though this is in part a Lupus Awareness project for many reasons.  Just trust me when I say that this has to have a lot of careful planning and considerations involved.  I spent a lot of time evaluating before offering the invitations that I have put out.  The only reason I’m addressing this now is because it’s about to become a lot more visible.  Crowdfunding has to happen this year.  So there’s that.  🙂  This is a documented project.  There will be video.  It’s going to be epic.

I am reminded of things from the past sometimes that are as encouraging and motivating as anything current.  I recently reconnected socially with one of my best friends of many years ago, my first hiking buddy. This is someone that has seen me go the miles even when I was in tremendous pain and exhausted and overheated.  They’ve been through very dark nights in deep woods with me as well.  They’ve seen me struggle and improvise, and I can remember being goaded into taking things on that I felt uncertain about too.  That makes me laugh because it helped me learn to take chances, embrace opportunities.  Part of their words to me on this project were, “I know you/your strength and you can overcome any obstacle.”  It came with a reminder that the place is sacred ground too.. and most people don’t realize that this is a spiritual journey as much as anything else for me.  As a First Nations woman, that has to be acknowledged.  This one person remembers that about me and knows why this is so important.  That helped focus something in me that has been out of whack since 2016 began.  Thank you, my Friend.

Whatever you are reaching for, keep going.  The harder it seems now, the greater the reward will be when you get there.  It’s a lot of steps but the view at the top is spectacular.

T

 

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