General
Life is heavy (and you don't have to do it alone)
I don't know about you all but things have felt heavy lately. Just within the past few days I've heard of multiple people losing their lives to medical complications. And as someone who has lived pretty much my entire life in the medical system, it gets to me. Here's my reminder to you (and me!) that if you're feeling this, if you're tapped into the current stress and anxiety of our world, if you feel personally affected by these losses, it makes sense. You're allowed to unplug, to stop watching the news, to not respond, to cry, to do whatever you need to do. If you need someone to talk it out with, we have amazing community members here on transplantlyfe you can find using the find a friend tab at the top of our page, or come join one of our virtual support groups (We have one tonight, and you can find all future dates under the education tab)
Transplant life is hard but you don't have to do it alone.
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Words have a lot of power and using words like hard and heavy to describe life is actually inaccurate. Show me heavy and hard. There is no heavy or hard in life. There is just what happens in life and we put meaning on it . We choose what meaning we put. For instance I was waking up each morning with fear. I looked and when I woke up my hands were shaking. I put meaning on that of fear I was afraid when I saw my hands shaking. When I distinguished that what happened was my hands were shaking and I was putting meaning on that of thoughts of fear. When I separated them I was no longer afraid and no longer when I wake up and see my hands shake do I have thoughts of fear. I had collapsed my hands shaking with thoughts of fear.
Transplant Patient
Interesting. I agree words definitely have power, but I don't agree that we shouldn't use words like heavy or hard. There is what happens, and we do have choices in how we respond to what happens. Getting the news that someone I knew died from medical complications was really hard. Is it a fact of life that we are all going to die? Yep. Doesn't mean it's an easy thing to experience. Saying something is hard or heavy is not me assigning moral judgement to that thing. Acknowledging the emotion, and that it's hard, and that it brings up things in me as a transplant patient who is living life isn't handing over my power. It sucks. I hate it. Now if I chose to take that heaviness (which is a very real sensation I'm feeling in my body) and sit in that, and make this whole story around why my life is hard and heavy that could be problematic, but I'm not doing that. I'm acknowledging it's hard, because that's what I'm experiencing right now and I'm not about bypassing my human experience, and I'm choosing to do things like take my dog for a walk, and honour my grief, and spend time acknowledging that I went through some really hard things that most humans don't go through and I deserve compassion and empathy around that. I am giving that care to myself. When I acknowledge the emotion, identify what I need for support, give myself support and options and move through it, I'm showing my system resilience. This is where my power is
Honoring your feelings and feeling these hard or heavy is an important part of our journey as patients with chronic conditions and transplants. I think its important to recognize it and like @AliEm14 said not to live in completely. As humans we all have a way of getting our thoughts across, through words, through song and singing (which with our support group i absolutely love when Alisha starts us off the meetings that way) i digress. Life is unique and we only have one life to live, some of us are giving a tough deck to deal with but we try to find the silver linings where we can and lets honor all of the feelings good bad and ugly, it what make us, Us. :)
It is written that the power of life and death are in the tongue. Words have power. Always speak health and life.
Living in the medical system can be a weight some carry. My best advice to those who feel that weight: Be positive and speak positive.
I made it to 65 years old even with having had a transplant 12-years ago! I am so blessed, so fortunate, so grateful!
Transplant Patient
@SteveJPearson words are powerful. And there’s a very fine line, in my opinion, between staying positive and toxic positivity. We have to acknowledge the truth of how we feel to move through it. As humans we’re not supposed to be love and light all the time, nor are we meant to be negative and dark all the time. It’s how well we move through our emotions that matters. Personally I believe in the power of cursing it out, because it does suck sometimes, and then I can claim it and reframe it and move that energy instead of denying it or pretending I’m fine when I’m not
You are so right @AliEm14 ! I am the last person who likes to talk about feelings and emotions. Receiving a chronic illness diagnosis, and 16, my native kidneys failed by the time I was 22. Receiving a transplant at 24, I've been able to live the last 20 years of my life in extreme gratitude.
And I used to cry alone, in the shower or before bed. Just being so mentally and physically exhausted from appointments, work, family, friends, medications, rejection, and everything that comes with transplant and chronic illness. I used to think it was wrong for me even to feel sadness or fear. I would put those feelings aside and put on a brave smile for everyone, which is exhausting, too.
As I come up on some very difficult decisions the last couple of years, as my GFR started to decline, I have started to embrace those heavy feelings, and I acknowledge them, which feels so much better. I just make it a point not to sit with those feelings for too long. But when I acknowledge those very valid feelings, I have noticed that I have even more love and gratitude for the small, beautiful moments of my life.
I think the key with chronic illness and transplants is that we just can't sit forever in the dark. But embracing all the feelings that come with our life is a true blessing.
Its so important to honor the feelings and recognize them, and find healthy ways to find outlets. I think here at transplantlyfe and this community is a good place to start. thank you both @AliEm14 and @Jeanmarie Appreciate all the support!