Hello, my dear Readers;
HOLY SMOKES!?!?
I am stirring the pot of memories when I write this. Some things you don't believe exist or have happened until you look at the calendar and wonder where 16 years have gone.
This year, on February 16th, 2025, I am celebrating my champagne re-birth Day...lungaversary... bahaha, I just added that word to the dictionary on my computer! teehee
For years I have looked online to see if there are any "In Memoriums" or look into the Obituary in Ontario in February 2009. But, I don't think I am looking in the right places. I don't know anything about my donor. I stopped sending "thank you" letters a few years back. I mean, I don't want to send people letters if it just going to upset them or tear them open and read the words I have written.
Imagine, scouring through hundreds of oe obits, to look for one, that might be the obituary that will explain a little bit about who they were, I mean what was their favourite food, would it explain my sudden love of spicy foods? I mean I used to love the Wedy's Spicey chicken, but could never handle it. But now, I am eating ethnic foods from Sri Lamka that my co-worker makes for me. Imagine my surprise at how much I love the heat in their foods.
Firefighting has always been a passion... there's the heat again. Lol, I am kidding of course, not about fire fighting, but about the heat. Firefighting has been a passion since 1991 when Backdraft came out. "Let me go, Bull!" "you go we go"... yada yada
Moving on...
For 16 years I have tried to find a way to explore the avenues to finding my donor. As mentioned above, I really don't want to open up new wounds for them. I think that would hurt me more than anything else. I don't ask too much of my team in Toronto, I know that they can't tell me much if anything at all, but I sure do wish there was some kind of statute of limitations, that after 10 years some information can be disclosed. I am not asking for names, just maybe how old they were, where they are from, how they died for heaven's sake a first name.
Crazy as it sounds a lot of us have a morbid curiosity when it comes to the person who selflessly gave their life for us. Some of us suffer from some form of PTSD, and one hell of a case of survivor's guilt, yours truly included. No one really talks about the guilt you feel when you realize, that for us to be alive, someone has to die. It's a feeling that no one prepares you for. Transplant teams don't talk about the afterthoughts, the feelings, they dream and the overwhelming feeling of not knowing if you are doing your new tenants justice. Are they proud of us for helping them live on in their honour, or are we just supposed to deal with this on our own?
No one tells you about how your family is going to feel. They have no problems asking you if you have a good support system, but no one asks them how they are coping with the changes of your transplanted family member. No one tells you about the PTSD that comes with your main caregiver. Where is their helo? Where is their support, and where are the resources to help them. Not just transplant caregivers, but the ones who are there from the beginning, before the transplant, and before the changes.
These last few years, I have come to accept the fact, that my mission, my future, my legacy is to advocate for those who don't feel that they need to be advocated for. I never thought I needed to be that person, who was supposed to let things like this go. I feel the same way about First responders, all the things that they see, and they feel that they cannot tell their families, and feel that they can only speak amongst one another, You know I get that. Your peers will see that in you before you have the chance to reach out.
Some go blind and tell you to buck up, but that's not what needs to happen. We all need to take care of each other. I am fixing to create a foundation to assist transplant caregivers and patients to be able to get the most out of their transplant experience, on both sides of the operating room.
I am always looking for ideas to talk about with you all. But I do believe that this one will need to be discussed more frequently. If you love your family, stop treating us like delicate little flowers, and talk to us. Explain how much this whole transition has affected you, if it hurt you, we can work on it together.
Feel free to reach out if you have any ideas, or questions for how to cope with your CF, or how to cope with the after-effects of your loved one living with the transplant. Some people are open to communication, but please do not feel offended if it's not something you want to share with your family, or vice versa.
Feel free to reach out on this blog if you want some tips and strategies to work through some things that you don't feel your team is supporting you enough. I am sure with all our resources, we can work together to figure things out.
16 years of living my life with recycled parts, what an amazing adventure this has been. Thank you for following me today, I appreciate how much you support my blog and take the time to read my Rambling.
Be safe, drink plenty of fluids, and if it's cold where you are, stay warm.
Much love and appreciation to all
~Moi 🫁
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| New Vlog coming in Spring 2025 Image is TM |
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