It’s been nearly a year since I wrote a post here. In fact it’s probably been about that long since I wrote words in consecutive order that were anything other than hello, how are you, I’m fine. The last two words are a lie but it’s easier to say them than to explain all the shit that’s being going on these days. Which is why I’m here on my diary/blog whatever this thing is now. Grab a snack and a drink, possibly some coffee, make sure everything has a lid on it though, this could be a bumpy ride.
How do you guys like to get your news? Good first then bad, or vice versa? I think I’m more of a bad news first kind of person, but then I tend to stop listening and forget to hear the good part ‘cause I’m working out in my head how I can fix the bad stuff. That’s me — fixer, problem solver, bringer of logic. Which makes for some rough seas when the things that are bad can’t be fixed, solved or have any semblance of logic at the surface level. What happens when I get to that point? I drill down into the situation and find the simplest place to bring logic in and stay there. It’s how I survive as a disabled person navigating a world not meant for me.
What these next few things have in common is this: they suck and there’s nothing I can do about them. But they do have small pieces I can hold on to, too.
Tangent time. My grandmother is a fan of elephants. We’ve been giving her elephant statues and fabrics and calendars and whatever else we can find as far back as I can remember. I don’t know for sure if she’s really been into elephants her whole life, all I know is one day grandma said she liked elephants and we ran with that with every gift we ever gave her. There’s one thing we all know about elephants. Well okay aside from that they’re big grey animals with big trunks and that one we know who could fly ‘cause he had big ears. Elephants never forget. An ironic statement considering one of their biggest fans (allegedly) has one of those diseases where they go forgetting things. Grandma has dementia.
It started with a stroke and progressively got worse. It wasn’t one of those strokes where the person suffers such trauma they can no longer function without someone else’s help. For anyone who has or knows anyone who has suffered such a severe event, my heart hurts for you. Grandma’s was a smaller, mini-stroke. One day she walked out of her house and up the street to her weekly hair appointment as usual. Except this was not a usual day. She left her purse, her keys and a small part of her mind, at home. For anyone reading this that knows my grandmother you may know that she is never without her purse. She never does things like leave her keys somewhere she won’t find them again. Everything has a place and she knows exactly where that place is. Thankfully her hairdresser knew something was off and called my aunt to let her know things were amiss. So much so he did not let her leave his salon alone. He walked her to her condo and stayed with her until my uncle showed up.
There were MRIs and consultations and medications and the verdict was she had recovered from the mini-stroke with little damage and would carry on fine. Except she didn’t. She slowly continued to lose that OCD, remember everything, always on top of things brain she kindly passed down to her oldest granddaughter (me). We moved her out of her condo and into a retirement home shortly after her 87th birthday (this past February). She fought it the whole way, eventually settling in, and as soon as she was ready to be comfortable with her new situation, we moved her again.
The thing is, we thought the progression would be slow. It wasn’t. She was wandering the halls and losing her way and there’s a big difference between retirement living and assisted living and it turns out she needed the latter. In April we moved her into a full care facility. Although she’s fighting it every day (her memory loss and her living situation) she’s doing as well as one can in her situation.
For anyone out there in the world that would be enough to drive you crazy with worry, and frustration at not being able to do a damn thing about the progression of a disease there is no cure for, and while I would have been upset at myself for even thinking of curling up into a ball and screaming at the world, the universe wasn’t done throwing punches at my family yet, so I had no time for that.
Tangent two. I have a strange relationship with God and religion and all that goes with the ideas behind them both. I enjoy writing about the concept of heaven and hell and good and evil but I don’t believe there is one all powerful magician pulling the strings of anything we’ve ever done or will ever do. As much of a science fiction and fantasy fan as I am, I refuse to put my life in the hands of a fictional being. Oddly enough, for anyone who knows me well, I have faith in people. Doctors and scientists and people who know things I don’t, tangibles, if you will. That all being said, I do believe in karma. And right now I believe something my family did somewhere along the line disturbed the peace of some karmic force and we’re all living with the consequences.
Diseases. Incurable ones, curable ones, un-identifiable ones. Someone in our family has one of them. My uncle has both a form of blood cancer and a heart condition. My aunt, his wife and my mother’s older sister, had breast cancer in her mid-thirties. At the same age as her mother was, my cousin was diagnosed with breast cancer and went through a double mastectomy and chemotherapy while pregnant with her second son. Her daughter has a similar disease to mine. My doctors tell me they are not the same thing, but the similarities in our conditions are eery except hers has a name.
Because of the family history my mother and her younger sister were tested for the BRCA gene, my aunt tested positive, my mother tested negative, which meant I didn’t need to go in for testing. Cheryl immediately had a double mastectomy to ensure the gene would not manifest itself into cancer. We all get screened (mammograms) regularly as a result of all this.
So it was surprising and yet, not, that in January my mother discovered a mass on her left breast that concerned her. She went in for a mammogram though her previous one not long before had not shown anything, and they found nothing out of the ordinary. Because of our family history she insisted on an ultrasound, which indeed found the mass she had been feeling. The immediate gut reaction is try not to panic. Could be anything, lots of women have lumps and masses that turn out to be fat build up. But we have a history and as the saying goes, it does tend to repeat itself.
The women in our family are strong and resilient and we fight like hell no matter what it is we face. From the smallest annoyance to the biggest blow. We all handle our fight in different ways. My mother is an outward fighter. She yells, and screams, a lot, no matter the size of the issue she’s facing. This was no different. In March she had a double mastectomy and despite it being a difficult procedure that should have had her in the hospital for at least 2 days she was home the next day. Because that’s where she wanted to be. She insisted they release her, so they did.
We hoped that was the end of it. The mass was small and it didn’t affect much of her lymph nodes. But that was not to be, and it was recommended she go to at least 4 but probably 6 rounds of chemotherapy, one every three weeks. And because, as I mentioned already, we’re fighters, mom’s system kicked ass and the chemo won (by killing the things it was supposed to), but didn’t (by not killing everything else). Did she lose her hair? Yes. Was she tired? Often. But she continued to work and take care of her mother through all of it, because of course, this was all going on while her mother’s mind was slowly deteriorating.
By this time next week mom will have completed the final step in the process and the rest will be about maintenance.
There’s good news in all of this, the most important of which is that everyone is alive and on the way to healing, or at least in a good place where they’re been well cared for. On a surface level, Harley is a year old now and he’s the funniest, sweetest, best dog in the world. He’s helped mom keep her spirits when things went off the rails and given me a reason to not be sad or feel bad for not being able to run all over town taking mom to and from appointments — I always had someone or something to take care of. He loves to play and will bring toys to one of us at all hours. Just when you think you’ve tired him out he brings another toy and looks at you with disappointment if you don’t throw it for him to catch again and again and again.
I’ve been working out with a trainer twice a week, and working on my health in general by cooking my own meals, and in the past year I have gone down 3 clothing sizes and gained enough muscle to turn living as a wheelchair user from a daily chore to a minor annoyance. The new wheelchair and the new SUV have been helpful in this too, one motivating me to get stronger — the SUV and getting in and out of it — and the chair — because I’m the only one who pushes me around now.
I inherited many of my mother and her mother’s traits. I can be fiery and scream-y like my mother and I’m OCD, organized and neurotic like my grandmother. But along with those traits I have one thing nobody would believe I had in me. Calmness in the chaos. Not because I believe nothing else can go wrong, but because I believe it can, and will. And I believe we’ll get through it just like we do everything else. Fighting back against every obstacle placed in front of us along the way.