On television, an episode of Dr. Phil was on, and I caught a comment where he asked a woman if her health had become her identity. That really stuck with me, because, you see, that is exactly what has happened to me. I haven’t written on this blog in a while, and there is a reason for that–I’ve been ignoring it, on purpose, because… you see, my health has become my identity. I’ve incorporated it into everything that I do in my life. I go to doctor’s appointments, and I post about it on Facebook. I’m feeling lousy and I message a friend of mine online and complain. I get a bad test result and I call my mother to whine and cry to her. I’ve even incorporated it into my writing, both here on my blogs and in one of my books, where one of the characters is dealing with a mystery diagnosis and the frustration of trying to get someone to listen to her and believe her, and how her illness is tearing things in her family apart. It’s not autobiographical–but sometimes, sometimes… sometimes, I fear it might be.
Because, you see, I used to be this dynamic person. I used to stand toe-to-toe with district attorneys and ate lunch with police officers and laughed about wild hogs and handguns (it’s a long story) and I used to teach classes to criminals who were ordered to go to my classes in order to get out of their probation. I used to go and do presentations to large corporations and to high school and junior high schools where I’d talk to hundreds of kids at one time and answer all their questions. I was interviewed on the news a lot and held a lot of press conferences. I had the personal phone number to the state representative at the time, may he rest in peace, who worked with me and my agency a lot. I’ve talked to John Cornyn on phone and I’ve met George W. Bush in person (think what you want about the man, he was still the president–like it or not). I commanded a presence, commanded an audience, and people noticed me–in a good way. I couldn’t, for a time, go anywhere in my city of about 100k people (I don’t live there any more, btw) without someone running into me and saying, “Hey, aren’t you that lady from….?”
And now, sure, people notice me too, but for completely different reasons. Oh, yeah, I get noticed because of how puffy and swollen my face and hands can sometimes be, or the oxygen tanks I carry, or the wheelchair that gets in someone’s way. And I’ve seen the looks of people who think I am just being lazy and need to lose a few pounds and get up and take care of myself–and they don’t know what I’ve been through, but I’ve felt their judgement. Yes, indeed, I get noticed when I pull into a parking lot in a big white van that says WHEELCHAIR VAN on the side and beeps when you back up. And that’s not how I want to be noticed, not at all.
I used to fight for my son in school, taking on the ECISD school district, fighting for anti-discrimination, ADA compliance, and forcing them to enforce the anti-bullying laws they had on the books. I was at that school every day, fighting for him. I got the Office of Civil Rights involved and had meetings with their attorneys. I went to every school presentation, every performance, checked every homework problem, and was there for my kids. I was a good mom, and I loved being a mom.
And today, that same boy is 19 years old, and two nights ago, I was lying in bed and he had to help me take my pants off because I couldn’t do it myself and no one else was home. I couldn’t bend over, because with the PH, I can’t breathe when I bend over, and my back is so bad, I can’t twist or turn at all to help. That wasn’t nearly as bad as the time, about two years ago, when I got out of the shower and fell on the floor in the bathroom, completely naked, completely wet, on the cold tile floor, and the only one home was my son… and having to lie there, like that, unable to move or get up, while he helped dry me off, put a pillow under my head, bring my medicine, and of course, covered me up, and sat on the floor with me and tried to make me laugh while we waited for someone to come and help.
I’m supposed to take care of him. He is NOT supposed to take care of me.
And as such, I find that now, even though he’s an adult (so they say in the USA, but he’s 19 and he’s far from grown)… I find that I let things go with him that I shouldn’t, because I feel guilty about all he has lost, all he should have had in me, things his sister has had and he didn’t get, because I’ve been sick. I feel guilty, so I’ve been a bad parent. Not on purpose. It wasn’t my intent. It’s just… yeah.
And so yes, yeah, absolutely, my health has become my identity. When they tell you that you have a terminal condition, that your life is going to change drastically, it takes a long, long time for that to really sink in, if you want to stay alive. I mean, sure, I could keep trying to do all the things I once did, and I would have been dead by now. But I’m alive. And I shouldn’t be, but all statistical purposes.
I don’t know.
But what I do know is that I spend a big part of my day reading about and researching treatment protocols and looking for doctors who are doing cutting edge technology on the procedures that I need that might, maybe, might, save my life–or at least extend it long enough that I would have what one might consider a ‘normal lifespan’. I’ve changed my diet, mental attitude, my medical regimen, my sleep schedule. I use a wheelchair everywhere I go and carry big tanks of oxygen and wear a nasal cannula 24/7. I and my family have spent hundred of thousands of dollars to keep me alive and try to improve the quality of my life.
And sometimes I wonder: What’s the point of being alive if your entire life is spent in the pursuit of being alive? I mean, when do you get to start living the life you’re supposed to be saving? Is the point to just prolong the agony or is it to allow me the time to do the things I want to do and be the person I want to be?
And how do you find that happy, peaceful place in the middle between the two? I mean, if I don’t do any research or go to any doctors or take any medicine, I die. If all I do it the same, what’s the point of living?
So the middle ground? I don’t know. I’m still working on it. I’m in new territory here. I’ve never had a terminal illness before. And since there aren’t very many people in the world who have lived through what I’ve lived through, and statistically, I should be dead, I really don’t have that many people to turn to to commiserate with.
And while I know my friends and family can be empathetic, trust me on this, there is absolutely no way you can know how I feel. I can say that so assuredly because I can honestly tell you *I* don’t have a freaking clue how I feel most days, so there’s no way you can possible know what I myself am struggling with. And while I know you can empathize and sympathize, there are some parts of journeys like these that the person walking the path can walk with others, but the burden they have to carry is theirs alone, and while it helps to have others with you on the journey, no one else can take your burden and carry it for you–and my friends, sometimes, it gets really, really heavy.
So that’s where I am right now. Trying to find that happy place between my identity being my health (or lack thereof it) and finding a new identity for who I am going to be now that I am sick. I realize with startling clarity that I will never again be the person I once was. And I think I’ve become mostly okay with that. But I’ve been slowly working on getting back some of what I’ve lost, while discovering this new person that I can become.
And maybe that’s what I’m going to talk about on this blog now, for a time… how to discover who I am both in spite of and because of being sick, discovering an identity other than just being sick, and learning to live while I’m alive…
That last part comes from a Bon Jovi song, great lyrics: It’s my life / it’s now or never / ’cause I ain’t gonna live forever / I just want to live while I’m alive
Keep trucking, my friends.
Live and love,