Why Did You Have To Get A Rare Disease?
Discussing what amyloidosis is. It took you away from us.
So I forgot to mention the cancer research I’m doing now. When talking to my relative. I learned that more people I am related to didn’t graduate from high school. I haven’t shared about my sibling’s diagnosis because they only want to share with who they want to share with. So I will only say this. Still it helps me to write because I have to wear this too so that I can help in the healing process. Godwilling.
I talked to this relative for a good minute and it was a good conversation. I learned that they sell meat to people door-to-door in Southern Georgia mainly it seems. I am still learning about who they are.
And Godwilling, I am safe talking to them.
In their presence, safe and protected. Please let me be.
Today I want to talk about my mom since she is next on the list. I am going to talk more about amyloidosis. She was diagnosed in August 2017 and within months by December, she was gone and I can only start writing about this now. My mom was in a lot of pain. And I want to make her proud so she has healing through me and my siblings, her progeny.
Her legs would swell I remember one sibling saying. And this is a symptom. Before she was diagnosed with amyloidosis, this was a problem. A sign that wasn’t caught in time. There are different layers to this because now I see that my mom is a Black girl/woman in a system also not really meant to treat her properly. And an immigrant one too which adds another intersection of invisibility.
From Anambra to Columbus, God. Let us build so we can prevent error.
I got information from the website for Penn Medicine — wow, I could never. Or could I? Wow.
What Is Amyloidosis?
It is a rare and serious disease where amyloid proteins build up in organs. Amyloid proteins are misshapen proteins that, as they build up, keep organs from functioning properly, and in my mother’s case, from functioning all together. She had amyloidosis in the heart. This is also called “cardiac amyloidosis” or “stiff heart syndrome” meaning her heart eventually stopped working due to the progressive buildup. It is like cancer, but instead of cancer cells, the protein destroys the heart. So her heart essentially hardened until it stopped working. Like a fairy tale script. But real life horror.
It Is Cruel That My Father Did Not Try
Now that I write this, I feel how much fear my mom had. And pain. And fear. And pain. And I see how cruel my father is to not have reached out to check on me or offer condolences. I wonder how my other siblings feel. Writing helps to accept what is and move forward in healing.
What Are Symptoms Of Amyloidosis?
If I remember, my mom complained about tingly feet, tingly hands, maybe. I don’t remember though. She for sure had swollen legs. Both are considered symptoms.
I’m not sure if she experienced other symptoms, but they include:
- excessive urination
- fatigue
- heart palpitations
- shortness of breath
- trouble breathing while lying down
This is enough for now. I want to talk about more. I was at a place called Switchyards in Georgia when my older sister called about mom. It was a co-working space in Atlanta that now as my life reroutes, I see how off track I have been for the first 32 years of my life. My mom getting sick with amyloidosis has helped to reroute me. It was her gift to us I feel. Her spirit freed from her body and that helped to free us. It was the only way to see multidimensionally instead of in the linear way that we had known. Through the body, the pain, ironically, not so ironically, like Jesus Christ is what I think sometimes about my mom’s passing! Fcuk.
Okay let me go now.
It is a lot to write about this and finally.
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