My Aunt

I had a lovely aunt from my maternal side of the family. Gentle, soft-spoken but firm; loving and tender; suffering greatly from the loss of a husband, a daughter, then her son in law, leaving her grandson orphaned, she was love personified.

She was the only genuine mother figure I and my cousin’s wife (Cousin being son to a different maternal aunt) have had. But Covid-19 took her, and our world, our only taste of unconditional ‘parental’ love went with her.

She often used to phone me, just checking on me, on us. Not because she wanted to know how her sister was, but because she loved ME. She never complained, just stated facts when I asked how she was.

She wasn’t well. Bone pain, diabetes complications, heart problems, in and out of hospital, in and out of comas. She suffered terribly. She wished she was dead.

And so, when Covid-19 took her, it was truly bittersweet. Finally, she was free. Finally, she was NOT in pain. No more would her days be either “not too bad” or “awful.” There was no more of a life of “bad” to “worst ever.” But oh, how I miss her. And how saddened I was that she had to suffer before finally dying.

At the start of this year when I was still semi-active on my Facebook page, I shared that finally, after 12 years of trying to get a diagnosis and cure, I got one. Except the disease is incurable and progressive.

Some girl commented, “That’s sad. Oh well! At least you know what it is now!”

Seriously, if someone hasn’t asked you to find them a silver lining for their cloud, don’t do it. Don’t find one for them. Just sit with them in their bad news. In that moment, feel with them what they are telling you they are feeling. I wanted a diagnosis so the suffering would end! Here we are in April and nothing has changed! I just have a name for it now.

I’ve not ever had a ‘happy and healthy’ life. I don’t know anyone in my life who has been in my shoes. Born too early, I was born into suffering. My first ever childhood memory is of me crying in pain after surgery at age three. I can’t describe the exhaustion of being in pain my entire life. I wish I could. I wish so much that I could give a glimpse, give people just a day of what I’ve had my entire life. The tests, needles, operations, loneliness, hallucinations, X-rays, breathing treatments, Emergency room visits. The sufferings I shared with my parents, and the suffering I hid. The extreme pain I didn’t think to share because I thought it was normal. Oh my word. How sad. How sad for the little girl that was me-not telling my parents about the leg pains, the burning, gnawing abdominal pain…They eventually found me rolling around crying silently in bed, which led to a Crohn’s disease diagnosis of seven year old me. SEVEN YEARS OLD. A junior school teacher I never told them snot even after the diagnosis, who seeing my tremendously thin frame asked if my parents don’t feed me.

And so, after decades of the same. Year after year… I am done. I am truly done. If I didn’t have children, it would be very difficult to justify staying alive. When you look at it through cold, hard, non-emotional eyes (Made that up.) , there’s no reason to keep living. I can’t be the person I wanted to be. I can’t visit the sick, I can’t drive to hospitals and find the poor and give small gifts. I can’t be a volunteer. I can’t gos day without pain. That’s kinda messed up. There’s much that I can’t do to be helpful to anyone else. And instead, I cost money and ever will. The costs will only increase. They are only increasing. I’m already going to have to pay over R2000 for today’s rheumatologist visit that a sweet friend remembered yesterday that I’d forgotten was so close. Thought I had a day to go. My ineffective pain pills from the ineffective gastroenterologist already had to be paid for by me despite my medical aid plan.

There is no silver lining. So, don’t tell me “at least” I know what it is. I wanted to know so the suffering would end. It’s not. This is money we desperately need for the children. University is coming soon. The other children need more (specifically my ‘ausome’ ones and ADHDers.) My “at least” will be like that of my aunt-my children will mourn my death, but rejoice that I’m free at last.

I embrace the end. Many of us chronic pain sufferers do. And while we wait, we hope for a ‘better’ day. And we rejoice in those who see us. Who see how hard it is, who cheer us on, celebrate our doing what’s normal for others but almost insurmountable for us.