Care Partner
Community Care
My husband got me a book for Christmas called The Future is Disabled (It's an amazing read if anyone is looking) and there's a part in the book where the author is talking about disabled individuals (including those who are immunocompromised, those with chronic illnesses, neurodivergent individuals...) and the ways we receive care and care for one another. She talks about how important it is that we not only care for one another but then also share how we've been cared for. Immediately I thought of TL, and all the ways we care for one another here. Offering support, answering messages, sharing our own stories. It's a gift I haven't been able to find in any other transplant or disability support groups I'm in.
But it also made me think of ways I've been cared for by this community and by those outside the community with my latest surgery. I had friends rent hotel rooms for me so I had a safe place to stay that was close to the hospital. So many people answered their phones in the middle of the night when I needed someone to talk to. People sent playlists and memes and kind messages.
I'd love to hear your stories of how you were cared for, both by those within this community and those outside. What was the most meaningful support for you, or what support do you wish had been offered?
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I love this topic already. There is something so healing about "community care". I'm a part of a community called Self-care Society. In the middle of the beginning of the pandemic, I was overwhelmed and stretched thin. I felt like I had the weight of the world on my shoulders with trying to homeschool my 4 kids, stay quarantined, build a speech therapy business, and support my husband as he got through his PhD dissertation writing. I got on a zoom call with a group of ladies from the community. Although they were close to strangers to me, they let me open up and share my struggles, frustrations, and fears. I took a long time to tell them all of my anguishes and I apologized for taking up so much space. Each woman went around the Zoom saying that they would gladly and willingly give up their time to share in order to give me the healing space I needed. There was so much love present. I've never experienced that kind of healing space in community, but I knew it was really special.
I've found the same kind of unconditional love from many members of this community. I like being the strong one, but sometimes I need to take up some space and there are many of you who are willing to be that community for me.
Thank you!!
I love being able to reflect back on when the transplant for my son happened. One big thing I remember is the entire community came together for our family. Meals were provided to us for 2 months since I was in the hospital, he was in the hospital and my husband was in the hospital taking care of us all while completing his doctorate degree.
But honestly, the community care has not ended. I never know when my little guy will be "Sick enough" that we have to head into the hospital. With a family of 7 people having a schedule is important and when we are thrown off course it can be tricky to handle. Someone always has stepped up and brought us dinner, tended to the little people, driven kids to activities, prayed for and over us.
Something I learned over the last 6 years is that it's humbling to need help and accept it. No one wants to feel like a burden or the one that is always asking for help. BUT - when I am able to care for others, they NEVER feel like a burden. The task is often simple or easy. On another note, I save up my asks now for things that are really important (a kid being admitted to the hospital or the big annual visits) which are often far and few.
I am adding that book to my list of books to read!
I have a very, very difficult time accepting help. I am a caregiver. I want to take care of anyone and everyone. When I need help, I never ask for it. My family tells me all the time that I could be a little less independent. I never feel like anyone is every a burden, but if I were to ask for help, or admit that something is wrong I feel like a burden.
My good friends and coworkers knew this about me, and my work sent a bunch of money via GrubHub, and Venmo for me to order food for my family, hire house cleaners, fill my car with gas, and use the toll road on my drives to and from the hospital. It meant more to me than I could express to them. I wasn't hungry after transplant but my family was. They could order whatever they wanted to eat. I wanted to cook for them, but I was very sensitive to heat for a few weeks and standing by the stove made me want to pass out.
One of my friends sent Crumble cookies to the hospital staff while I was there on a return in-patient visit after surgery. (it was when we found a blood clot) It meant so much to me that she thought to do that. I don't like being in the hospital, because again I feel like a burden, and every nurse came into my room just to say hi, and thank you. Of course they also took care of something while they were in there. My friend was incredible for conveying my needs to the hospital staff while also showing them appreciation.
One of my mom's friends goes camping a lot and collects crystals. She found a blood stone quartz and polished it up and sent it to me, after my blood clot diagnosis. That little act of kindness brought me so much joy. There was so much thought and dedication that went into that small gesture.
I also find so much comfort in this community. I feel like I monopolize people's input and knowledge so much, and I want to provide value to others just like I have received here. Just knowing that you are not alone in this journey makes such a difference.
Agreed @TServold! And what amazing people you have in your life!
@TServold I did a whole podcast on How to stop feeling like a burden. It’s such a common trap to fall into, especially when you have a chronic illness. Feel free to take a listen here.
https://podcasts.apple.com/us/podcast/military-mama-looking-for-words/id1528449244?i=1000549097989
Thanks! I listen to podcasts on my drive to the office. I will absolutely listen!
Transplant Patient
I think about how we give and receive care so often. My transplant was almost 18 years ago, and during that time care looked like:
-someone opening a bank account where family and friends could drop money for my parents and sister to have a hotel, food, and gas money to be near me
-setting up cleaners to deep clean my home before I was released from the hospital
-gifting me a beach bag and money for a warm trip once I was healthy
It looks different now than it did then, as things get less "critical" for everyone on the periphery:
-a text on my liver birthday, remembering
-a door dash gift card for nights we don't have the energy to cook
-taking my kids on adventures so I can rest
I love this chronic illness community. ❤️