“Real” writing and vulnerability

I wrote a piece about motherhood yesterday about which I was the most nervous I’ve been about sharing so far. I really felt like I was making myself quite vulnerable in sharing it, just because I was writing from the standpoint that my experience was common, when I’m not sure that it is.

What I do notice, though, is that with each of these pieces I write, I’m discovering that I do indeed still have plenty to say in my “real writing.” My real voice is not gone, even though I didn’t do any of that type of writing for at least ten years. I think the key to writing in my “real” voice is that I’m not concerned with whether or not I make money from it. If I happen to make any, great, but that just can’t be my primary focus or I suspect my throat will figuratively close up again.

Interestingly, I actually shared the link to that article with my youngest son, too. That’s remarkable for two reasons: I’ve never shared anything I’ve written with my kids, and he’s the only one that seems like he would even be interested in reading what I write in my “real” writing voice.

He’s also the only one of my kids with whom I’ve shared the details of my long-awaited diagnoses. The other kids know that I’ve received the diagnoses but don’t seem too curious about them at this point. Maybe they’re scared and my husband’s cancer is all that they can deal with and maybe my youngest just has more emotional strength to face it. I don’t know if it’s that or if they’re just genuinely uninterested.

Sharing both my writing in my real voice and the details of my diagnoses are acts that make me feel vulnerable. And for many reasons, I trust him with that level of vulnerability in a way that I don’t as much with the other kids.

Of course, I’m also trying to be very mindful of how much they want me to share. My mother-in-law was and is a famous oversharer and J didn’t always enjoy that while growing up, to say the least. You have to be conscientious about how much your kids want to know.

To be honest, I don’t really know what this means about my relationships with each of the kids, if anything. I do know that with three kids, they have each been my favorites at separate times in their lives, so everyone has had a turn at that, and that always happened quite organically and without forcing anything.

I guess to continue my motherhood article, I’m just in a season in which I gel the most in a very natural way with my youngest. I also feel like he knows me the best out of all the kids.

My oldest and I have a sort of closeness, but our personalities are often very similar. As the oldest children in our families, we are both headstrong and stubborn and have difficulty accepting help, even when we really need it. We both tend to prefer to struggle alone rather than accept it when people offer help. Sometimes that leads to clashes between us, and I often find myself trapped in the same types of communication/miscommunication loops that happen with my mom.

My middle child was so secretive for so long that I just now feel like I’m beginning to get to know her, through the small bits of information that she doles out. I know that in her case, at least, a lot of the secrecy was due to being trans. But I sense both that she’s still a little wary about opening up to me, and also that maybe while she’s just beginning the transition process is not a time when she can extend much more to me than she already is.

But my youngest child is also the most like my husband of all the kids and therefore, our relationship is easier and more natural. Misunderstandings are always cleared up easily and without drama. He genuinely accepts me as I am and seems to care about me a lot, and the feeling is mutual.

That’s not to say that I don’t accept my other kids as they are or that I don’t care about them; I do. But I’m not always so sure it’s reciprocated, at least not in the same way it is with my youngest or to equal degrees.

And of course, because motherhood always means questioning yourself (assuming that you care about how you’re doing as a mom), I wonder if the relationship with my youngest really is different, or if we just continually reinforce the behaviors that keep us close.

There’s also the fact that my two older kids are both trans, and I have no idea how or if that affects our relationships. They both know that they have my overwhelming support and acceptance, just as they are. But often that seems like it’s not enough, and I’m not sure if that’s because they’re trans or if it’s something I screwed up in our relationship or what.

I can’t and won’t try to predict the future, but if I had to venture a guess based on how things are now, I think my youngest will likely continue to be an active part of my life even as he becomes a more established adult (keeping in mind that I also know he’ll naturally have less time for me, which will pretty much begin as soon as he goes off to college this fall.)

Still, at this point, he’s the only one I can see ever calling me to ask for advice. And he’s the only one that I think will be genuinely concerned about how I’m doing.

Of course, any of this could change. Once my daughter moves out (supposedly predicted to be in the next month or two), maybe she’ll eventually get to missing her mom. Maybe my relationship with my middle daughter will change, both as she goes through transition and when she’s the only one of my kids still living at home.

Still, I can’t help but feel vaguely guilty. I tried to be just as good of a mom to each of them but that didn’t guarantee closeness with each of them. It makes me wonder what I did wrong. But at least the fact that my youngest IS close to me makes me think that maybe I didn’t do anything wrong…at least for a minute, until my doubts take over again.

A brief note to Instagram marketers

I seem to be getting approached a lot in recent months on Instagram by marketers who invite me to become a “brand ambassador.” So far, I’ve never taken any of them up on the offer, because it’s always a bad deal.

If you sell t-shirts with feminist or anti-racist slogans, there’s already a better than average chance that I’ll like what you have to sell. But this bogus “brand ambassador” BS fails as a marketing tactic for several reasons.

First, although you’re trying to make it seem like I’m being honored somehow, it’s always just with a discount code to buy your products.

Second (and this is important), the t-shirts are always overpriced by at least 40 percent, so offering me a 50% “brand ambassador” discount isn’t enough to entice me to buy. At this point, the whole “brand ambassador” thing is basically just code for “please buy our overpriced shirts” and it pisses me off. I will never order anything from you, on principle alone.

For many reasons, I also suspect they’re scams. The websites each have a very limited selection of products and the people messaging me use similar language.

What DOES work is having a product that’s priced right in the first place. If you have cool stuff, I’m pretty likely to order from you at least once—no bribery or false flattery required. Then, if you want to encourage me to buy again, have some new designs and offer me about a 25% discount off your regular prices (which are already more in line with the standard to begin with.)

THAT is the real, organic way to turn me into an actual ambassador of your brand. I’ll buy your shirts, wear them in public, and then happily mention your name when people ask where I got them.

Who knows, though; maybe someone, somewhere, has researched the other model and really believes it will work. I didn’t last long at my only marketing job and probably for a reason. You can take my advice for whatever it’s worth.


I sent my mom an email last night, recapping the results of my genetic tests. I told her that I had really wanted to talk to her last night and didn’t think I would have much chance in the next few weeks for a phone call because I am so busy right now and juggling so many things.

She sent me a text today after she read it, apologizing for not being available to talk last night and saying that she misunderstood how much I really wanted to talk. She apologized repeatedly and said that she would be willing to drop everything to talk to me if she knew how badly I needed it.

I appreciated her apologies and we’ll see if anything changes in the future. I’d like to say that I believe her and that things will be good in our relationship going forward, but I’ve been burned by this hope so many times before over the years. We keep trying to repair our relationship but some of these issues are so deeply entrenched. She is the reason that I always open up my heart to trust people too easily and nearly always end up getting hurt by them.

But in the spirit of Mother’s Day coming up, I’ve got a lot more to say about mothers, and I don’t dare write any of this in an article where either my mother or my mother-in-law might read it.

Mother’s Day is always difficult for me. Even though my mom and I are trying to fix our relationship (and a lot of that comes down to me learning to accept her as she is and stop trying to have expectations of her), choosing Mother’s Day cards in particular is an annual source of a great deal of pain for me. This year, I had the extra challenge of having to pick out a Mother’s Day card for my mother-in-law, with whom my relationship is painful and difficult in completely different ways.

Mother’s Day cards speak to what I believe is a minority of adult mother-child relationships, describing the relationships as warm best friendships that you rely heavily upon, sources of endless support and selfless giving on the mother’s part. I know these kind of adult mother-child relationships exist because I’ve observed them. I think that millions of us–men and women alike–yearn for this kind of mother-child relationship and its absence creates a mother wound that on some level we spend our whole lives grappling with. (And it’s ridiculously hard to find a Mother’s Day card that basically just says “Happy Mother’s Day, I hope you have a good day, and I love you.”)

I am wrestling so much with my mother-in-law’s relationship with her son–forget how she feels about me. We used to be close and of course, I miss that, but our lack of closeness pales in comparison to how I feel about her failure to step up and be the mother that J deserves now. I am actually seething with unexpressed rage about the way she is handling everything.

I think she knows that J’s cancer is terminal. (If she didn’t before, one of her other family members who are still on my FB list surely saw the article I wrote about our marriage and the probable outcome of his cancer and told her.) If there was ever a time to show your love for your child, it should be when they have a terminal illness, but she is not changing a thing.

I don’t know how much J wants me to write about his relationship with his mom, so I hope I don’t screw anything up. Basically, she was a single mom until he was 7, and he remembers a remarkable amount about his early years. He remembers her as being fun and warm, even though she was very young and very poor. Then she married his stepdad, who was violently abusive to him, and everything changed.

They still had some type of bond despite this, but his mom broke his trust repeatedly in his teens by sharing the things he had told her in confidence with her friends and family members all across the country. Eventually, he just stopped sharing anything,

By the time we got married, she would call us nearly every Saturday morning at some ungodly early hour because of her repeated, rude failure to account for the facts that we were a time zone earlier than her and that we worked second shift. We didn’t even get home from work until after midnight, yet she insisted on calling us at 6 am because she was a morning person. I remember dreading those calls because she and J would get in screaming matches every time about politics. It was such a stressful way to begin every weekend.

They never got along about politics, but for several years, they could still manage to have some communication anyway by just avoiding that topic. Sometimes, she’d still bring it up anyway, but J could sidestep it to avoid fighting.

Now, there’s basically no way they can have a conversation at all anymore because she has gone totally off the deep end in pretty much every way. She’s barely recognizable as the same person. On so many topics, she is completely divorced from reality, in a way that makes it impossible to reason with her. There’s no such thing as “agreeing to disagree.” There’s really no way at all to have a normal conversation with her anymore; each call is just listening to a one-sided rant for an hour.

She’s always been incredibly self-absorbed and narcissistic (and I don’t use that term lightly), but she’s gotten so much worse in recent years. She has some health problems that in my opinion she makes WAY too big of a deal about and feels so incredibly sorry for herself. If you do have a conversation with her, she most likely will never get around to asking you anything about yourself, let alone allow you to get a word in edgewise. Either she doesn’t really care to know or she just wants to make sure you know every detail about her health.

She rarely asks J about how he’s doing, even with the cancer. She almost never asks about me or the kids, either; it’s like we don’t exist in her world. And despite the fact that she and I had a falling-out a couple of years ago, I really don’t think that’s why she doesn’t ask about us. I think she’s too wrapped up in herself and her health dramas to think about anyone else. (Never mind that J has fucking stage IV cancer and I have two progressive genetic diseases; they can’t compare to her concerns about her own health.)

When she does say anything to J about his cancer, she’s always suggesting some already disproven crackpot “cures” for cancer like lemon water or baking soda and maple syrup. (Just because something kills cancer cells in a petri dish does not mean it will actually cure cancer in humans.) It’s like she’s scouring YouTube for the cancer version of those people who believe in weird bullshit theories and call everybody “sheeple.”

I understand that she’s probably terrified when it comes to his cancer. No parent ever wants to outlive their child. I am compassionate about that fact. (Though I am also very worried about how she’ll react whenever he does die, because I predict that she’ll even further lose her grasp on reality.) But the way that it’s manifesting is the exact opposite of helpful and caring.

I’m just guessing here, but I think that what J probably wants from his mom now is for her to just ask him about how he’s doing. Express some sympathy for what he’s going through, taking chemo and still continuing to work full-time and then some. Tell him that he’s doing a great job and is being so strong. But she never does, nor does she ask him if he needs anything from her, and I just think it’s so fucking sad that it breaks my heart.

She can’t seem to see beyond the end of her nose to the fact that her youngest child probably only has a few years left. (I HOPE it will be a few years.) These are the times when she could be making memories and trying to rebuild and strengthen their bond, so that she has some happy things to reflect on when he’s gone. But she’s not doing any of that. She is very literally wasting precious time and honestly that makes me so sad that I feel nauseated.

He already said that he dreads having to call her on Mother’s Day because he has no idea what kind of conversational landmine, completely detached from reality, he’ll be confronting. There are no Mother’s Day cards for that kind of relationship or situation.

When I look at him and when he talks about his mom, I see the little boy inside him that he once was. Being a mom myself, I also think about when my own kids were that small. I didn’t always get things right, either. But dammit, I keep trying to improve and to meet my kids’ needs, because I don’t ever want them to dread calling me on Mother’s Day.

Good news, bad news

I went out shopping with my youngest son and his girlfriend yesterday for prom clothes. We found what we needed (and he looks so handsome and grown!) and we genuinely had a lot of fun hanging out together. It was just what I needed.

On the downside, I tried to make time to call my mom when I got back (even though I was still super busy and also had to run out and get health-related stuff for my husband) and told her it was about my genetic test results. I felt like she brushed me off. She asked if we could talk another time because she was tired (and hey, so am I! Pretty much always, to a medically abnormal degree!) but my life is so busy between now and Dylan’s graduation that I don’t know when I’ll have more chances to talk any time soon.

Yes, part of me is a little salty. This was very important stuff to me, even if it wasn’t to her—I mean, the answers I’ve sought for over 20 years are a big deal—and I felt like she couldn’t make time for me. I also get being tired, as I live with overwhelming exhaustion every day and still have to push through it anyway, no matter how much is on my plate. Frankly, the amount of stuff on my plate right now is way more than what’s on hers.

J gave me a hug after I told him that I was disappointed that my mom wasn’t there for me and he reminded me that he was (even though he’s currently on chemo.) But I couldn’t help but think about the fact that he won’t always be here when I need to talk.

But the problem is, apparently, neither will my mom. I still feel like her needs come first and she’s very, very limited in how much support she can give me and when. There’s no particular reason for it, as far as I can tell; she just seems to have an extremely limited capacity for trying to meet my emotional needs (or anyone else’s.)

And of course, I also can’t help but compare it to my own efforts that I put in for my children. I actually felt extremely sick and all-around crappy before I was supposed to take out Dylan and his girlfriend, but I sucked it up because I knew it wasn’t viral (and I ended up feeling better, anyway.)

It just reminds me that my mom is probably not likely to ever be there to provide emotional support when I need it. Frankly, I can see a number of occasions over the next few years when I will need (probably substantial) emotional support, and she probably won’t be there for much of it.

It will probably be like the other occasions when I’ve really needed emotional support over the past couple of years and she just wasn’t able to provide that, either. I truly don’t know if she doesn’t know how or doesn’t feel comfortable in that role, but it very often feels like she’s too wrapped up in herself to have anything left for me.

And to some extent, I get it: providing emotional support didn’t come naturally to me either at one time and I had to make a real, intentional effort to learn how. Sometimes, I feel like she’s just given up on trying to learn: take it or leave it. I know I can’t change her or force her to learn. I just wish she showed more initiative in trying to learn how to do better.

I’m facing a whole lot of really scary things right now. And honestly, I’m pretty tough. But I really wish I didn’t have to shoulder so much without her. What’s the value of having your mom still around if she doesn’t do anything that a mom should?

At long last, a diagnosis

Two of them, in fact. I first began the journey to find out what exactly was wrong with my health in 1999–yes, 21 years ago. I think I must have seen something like a record number of doctors in those years, as I pursued an accurate diagnosis.

It took 8 neurologists and at least as many general practitioners to finally find one who was willing to dig hard enough to find the right answers.

Along the way, I’ve been diagnosed with multiple sclerosis by 7 neurologists, all of whom wanted me on drugs that cost $100,000 a year. Most of those drugs also carried the risk of death and the doctors acted like I was crazy and unstable when I declined. It took so much courage to stand my ground. Two of those neurologists even refused to see me anymore as a patient after I said no to the drugs. (No matter how brave you think you are, you still can’t help but question your own hubris after two doctors fire you as a patient.)

Over the years, I’ve also been diagnosed with everything from “just depression “ and “try losing some weight” to fibromyalgia and even stuff that was very easily ruled out like Wilson’s syndrome.

Instead, what I actually, really have is not one but two forms of adult-onset leukodystrophy: Charcot-Marie-Tooth disease and Krabbe’s leukodystrophy. Yes, somehow I really have both, which is rather shocking to me at the end of this decades-long search.

Both diseases perfectly describe my symptoms (keeping in mind that I have the adult-onset version of Krabbe’s, rather than the juvenile form.) I conclusively no longer need to search for answers.

I thought my reaction at getting a diagnosis would just be “oh,” since it’s still progressive and incurable either way, but it turns out I’m not so easily nonplussed after all. I’m actually still struggling somewhat to wrap my head around this—especially because I actually have two diseases that are each pretty uncommon in themselves. I have no idea about how common it is to have two but it doesn’t seem very common at all.

And the weirdest thing of all is that they both really came down to a genetic roll of the dice. They’re both recessive diseases, which meant there was only a 25 percent chance my parents would conceive a child with either one. (Somehow, my sister got neither, thanks to the weirdness of genetic probabilities.)

On the one hand, I could feel doomed. I’m the only one anywhere in my family lineage to have either of these diseases. I just got a particularly unfortunate roll of the genetic dice.

But on the other hand, I don’t really feel doomed. Yes, the future is unknown and no one can predict how either of these diseases will progress. Either one of them alone could leave me blind or unable to walk or care for myself. Both of them combined could, in theory, ensure those catastrophic outcomes. But at the same time, they may not. I choose to live with bravery rather than fear.

All I can think about is how damn LUCKY I am that I didn’t have one of the juvenile-onset forms of either disease (particularly Krabbe’s disease.) From what I’ve read so far, the juvenile form accounts for 90% of cases and usually results in death by age two. Not only do I think that would have been unbearable for my parents, but I think about all the life I would have missed out on so far.

I’ve been so beyond lucky to have the great love of my life, and I found him at an early age. Then, on top of that, I’ve had the amazing, enriching experience of raising three really great kids who truly seem like they will make the world a better place.

We’ve raised them with very strong values to care about the rest of humanity. My youngest is kinda cheap (a joke but not really), but I fully believe all our kids will follow in our footsteps of being generous and kind. My youngest has a lot of career ambitions to help people and the potential to really make it happen.

I guess I could look at things like I’m doomed. I’ll lose my husband at an earlier age than average and I may lose the ability to take care of myself. But the other way I can look at it is that my very existence is a miracle. I believe in miracles very strongly and know I’ve received some already.

I feel like I have already done so much with my life, both good and bad. I have a lot to show for my time here and I’m making more of a positive impact as I get older.

I’m actually kind of excited to see what I’ll do next, even despite these challenges (or maybe even because of them.) I still feel like I have at least one great story to tell; maybe more.

But whether or not it ever becomes part of my official story, I am living proof that you should never give up seeking answers if you get diagnosed with something that just doesn’t seem right.

I have many medications I have to completely avoid as a result of the Charcot-Marie-Tooth, from common drugs like Cipro and Flagyl to drugs for breast cancer, in particular. How ironic that so many doctors pushed hard for me to take Ocrevus for my MS, which is a drug that itself increases your risk of developing breast cancer: had I taken that drug, gotten breast cancer, and then taken the usual medicines for that, I might have gotten dramatically worse and had no idea why.

Seems like I had to fight very hard for the right answers but doing so just might have saved my life.

Snippets of life

Today, J’s oncologist told him something that’s giving me reason for hope. I’ll probably get some of the details wrong because that’s what I do, but basically, he got more results of his own genetic tests, and they may indicate that he has more treatment options available to him.

The oncologist also said something like “you have a lot of years left.” We don’t know if that just means that J’s younger than most cancer patients or if it means that the oncologist predicts good survival outcomes for him.

I’m choosing to believe he meant the latter, which is exactly the shot of hope that I so desperately needed.

J also asked me what I wanted for an anniversary gift, since that’s coming up in about 3 weeks. Our normal budget for anniversary gifts is about $50 each. But suddenly, I remembered something I had hoped to get for our 25th anniversary two years ago: an anniversary band to wear with my wedding rings.

At our 25th anniversary, my husband had only been out of the hospital for a month since his cancer diagnosis. That year, the biggest gift was that he was still alive (which, honestly, is still the biggest gift.) We also weren’t exactly in a situation where we could have bought an anniversary band without taking on debt to do it.

But this year, we can actually afford it. So I picked out a beautiful ring that I’ll get on our anniversary. It means so much more than it would have before he got sick. All renewed hope aside, the fact remains that I still have no idea how many more anniversaries we’ll have together.

As kind of an amusing aside, I also got a t-shirt yesterday for “My Neighbor Totoro” since J really loves that movie. I haven’t seen it yet and he said that having the shirt now obliges me to watch it.

I said that was fine and that I would, but I was a little nervous because he described it as being like a Japanese “Mister Rogers’ Neighborhood.” I have a great deal of respect and admiration for the work that Mr. Rogers did, but I don’t think I could watch it now with much interest for many reasons (slow pace, it’s aimed at young children, my abysmal ADHD tendencies.)

He said it was actually a lot like a documentary about the Shinto religion. Then he said something like, “we all know documentaries are never boring,” with kind of a wink. I’m a big fan of documentaries and I’ve forced him to watch many with me over the years, so I really got a kick out of his gentle teasing about it.

I also read recently that Europe may soon be opening their borders to vaccinated American travelers. While at one point, Japan was on the top of J’s “most wanted to visit” list of countries, now he’s saying maybe he’d like to take the trip to Ireland we’ve talked about since early in our marriage. (Which reminds me: I have to consult with my aunt who has done all the genealogy for our family, to find out if it was my grandma or my great-grandma who came here from Ireland. If it was my grandma, I could apply for dual citizenship to Ireland.)

Of course, now with the purchase of the anniversary band, we’d have to save up a bit more money to be able to make a trip like that and still have money left in savings. My daughter’s boyfriend once mentioned paying for us to take a trip somewhere overseas, but sometimes he’s a big talker and I don’t know how serious he was.

Overall, I just feel a bit like I’m rejoining the world of the living again. Being able to make plans for the future—even if they don’t end up panning out—is such a reflection of the hope I feel. Maybe, just maybe, we’ll have more time. Amy’s hoping to move out in a month or two and Dylan’s going off to college in the fall, so we’ll be pretty close to an empty nest. Maybe, just maybe, there are still hopeful things on the horizon.

Here it comes again

My extreme anxiety is cyclical, apparently, and I’ve just discovered what triggers it: my husband’s chemo.

He starts another round tomorrow and I’m already feeling that familiar tightness in my chest.

The interesting thing is that I didn’t experience this when he was on chemo before; it’s only since the cancer returned. I wonder if he experiences the same kind of anxiety.

I keep telling myself that I shouldn’t be feeling this way because I’m not even the one on chemo. But feelings tend to ignore commands like “shouldn’t.”

I don’t really have any idea about how to get through this with more peace and calmness. I won’t write out all the reasons that I feel anxious because it wouldn’t help me to write it and I’m sure that nobody reading it really cares, anyway. Or if they do care, they’re just as helpless and powerless over this process as I am.

On another note, I finally got my long-awaited results of my genetic testing for leukodystrophy, and the results were remarkably non-definitive. I shared them with a friend who’s a genetic counselor and she should be able to offer me more insight tomorrow, if there’s any to be had.

Long story short: I tested positive for four genes that are associated with leukodystrophy, so that is indeed definitely what I have. I guess it would have been much more frustrating if I tested negative.

Two of the four genetic changes were listed as benign. With the other two, it was unknown how they will affect me. One of the unknown ones was a gene associated with Krabbe disease, which is always fatal in children but adults diagnosed with it tend to have longer lifespans. Whether or not my lifespan will be shortened is unknown, as is how it will affect me in the future.

Amusingly (gotta look on the bright side where I can, right?), cats can also get Krabbe disease, possibly lending further support to my husband’s joking that I’m actually part cat, especially because I’m extremely prone to spontaneous napping.

The other gene with an unknown outcome is one for Charcot-Marie-Tooth disease. The symptoms of that also fit me, but that’s not my only diagnosis. I apparently have some weird hybrid disease.

But basically, I feel like the genetic testing was a big answer of nothing. I hoped it would find something more definitive, like a very specific diagnosis that diagnosed me, but I’m also not totally surprised that it didn’t.

J says that I have a disease that will bear my name someday, when science advances enough to discover it. I’m not hopeful that day will ever come because so few people are studying any of the leukodystrophies. I’m “lucky,” I guess, that I didn’t get one of the variants that would have killed me in childhood. But because it didn’t strike me until I was an adult, I’m still a mystery, and one that is likely to remain unsolved.

Recovering through pain

I saw in my stats that someone recently read an old blog post I wrote, Recovery is Possible. And I realized while reading it that a lot has changed since I wrote it, 2.5 years ago.

In some ways, I’ve continued to work on myself since then. I described myself as a person of faith at that time, which I could still say is true, but now that statement is asterisked all to hell. I still have a deep sense of spirituality that guides me but it’s not as easily defined anymore. I stopped going to any kind of formal church just a couple months after I wrote that.

One thing that I also noticed, however, is that I wrote that about six months before my husband got diagnosed with cancer. In much of the time since then, my own personal growth has taken a backseat, as I’ve adjusted to the curveballs that life has thrown my way.

Now I am both recovering from pain and recovering through pain. The process of self-growth naturally looks quite different now. But that’s not to say that it’s stopped entirely, either.

I am grateful for having started the work on myself before my husband got diagnosed because I think I would have coped much more poorly before. Even if at times I had to set aside my own emotional healing and growth because I had bigger concerns to deal with, it’s not like all that progress was lost and undone.

Since then, I’ve also dealt with a noticeable increase in my disability (noticeable at least to me and those who live with me), as well as now two of my kids coming out as transgender. The first one wasn’t a surprise but the second one was.

Through all of this, I have still mostly been able to maintain a positive attitude. Yes, I sometimes feel scared, both about my disability and the fact that my husband is not always going to be around. But most of the time, I try not to let those fears take over.

Although my blogging here has become more inward-focused a lot of the time, I’m also learning how to find my voice in writing again. (As an example, I wrote this piece the other day about what parents of transgender kids want you to know.) Finding my own “personal” voice in my writing again—in contrast to the much different voice I use for professional writing—is a huge victory for me.

Mostly, I am not trying to fight the pain, nor am I giving into it. I’m letting it move through me and teach me what I need to know. Becoming disabled and facing the future death of my husband are going to change me, no question. But the more I can welcome the opportunities for growth that those will provide me (even if I’d honestly prefer not to have to experience them), the less likely I am to become hard and bitter as a result.

Ultimately, my goal is the same as it’s ever been: to keep learning from my life and to become a better person in the process. To be truthful, that process doesn’t look much like it did 2.5 years ago.

But I also can see how the actual process is shaping me for who I will become in the next phases of my life, once the crises are over. I think I’m going to become a diehard activist and advocate for both transgender kids and early cancer. I couldn’t possibly have foreseen that 2.5 years ago.

But the important thing is that I don’t feel like I’m regressing at all. I’m just trying to remain calm and still and let life takes me where it will. I think I’m ultimately going to be okay when I come through this, one way or another.

Hmm…maybe an evolution in my spiritual beliefs

J and I attended the virtual meeting for the parents of trans kids support group through his church today. Maybe it was just because I was connecting with other people but for the first time in a couple of years, I felt like maybe I could see a pathway forward to believing in a Christian God again. It would just be a very progressive form of Christianity.

The trans support group had a speaker join us by Zoom and I really, really liked the things she had to say. Her name was Rev. Junia Joplin, a former Baptist pastor who lost her job when she came out as transgender. Long story short, she ended up getting hired by a very progressive church in Toronto, where she is fully accepted and affirmed.

She gave us some links of suggested books to read that explore Christianity and transgender issues in a positive light. I ordered a couple of them. To be honest, it had really never occurred to me that there could be a progressive way to read the Bible and I’m curious to know what the books will say. I wonder if they’ll sway me one way or the other.

Apparently, there’s this whole world of queer theology that I haven’t really been exposed to before. I’m so used to the exact opposite, of people even among my extended family and in-laws who think you can’t reconcile faith and being LGBT.

Like J and I both said during the meeting, having transgender kids makes that a make-or-break issue for us with church. Any church that doesn’t affirm my children will never be right for me.

On the surface, at least, I can understand the rationale for a progressive vision of God. I fully believe that he would support transgender people as children of God. If we’re told that God can forgive murderers and prostitutes, why not transgender people who are only trying to live true to themselves? They’re not even in the same ballpark as murderers and prostitutes and their only “sin” is being who God created them to be.

I don’t know what the pathway forward looks like for me but it’s an interesting possibility to explore. I guess I have also kinda internalized this message that God loves everybody except me, and by extension, my kids. But I don’t have any rational basis for these beliefs.

I don’t know if I’ll ever be able to attend J’s church, even though they’re extremely progressive and are becoming well-known for their transgender outreach in particular. That’s largely because the only time they meet is 10:30 am on Sunday mornings, a time when I’m usually asleep.

But I’m also meeting a lot of other people through this group, like members of the local PFLAG group. In many ways, I’ve been looking for a place to belong, and maybe advocating for my kids will take a bigger role in my future.

The depression beast

My neurologist got back with me and after ruling out multiple possible other causes for my ongoing extreme fatigue, she has most likely concluded that it’s just stress and depression.

I added the “just” part—she didn’t— but I’m really disappointed by that answer for a whole bunch of reasons.

For one thing, it suggests that my current antidepressant is no longer as effective as it once was. That’s particularly bad news because I tried like 14 other antidepressants first that weren’t effective for me. There aren’t really many other options left, treatment-wise, unless I try ECT or ketamine. (I know the psychiatrists at UT Southwestern offer both treatments. I’m scared of ECT and I don’t know if they would let me try ketamine without first trying ECT.)

At the same time, though, I’m not entirely surprised that my neurologist said it was likely “just” stress and depression. I use the term “just” to try to minimize my own depression for several reasons. One is because I had doctors tell me for decades that there was nothing wrong with my health and I was “just depressed.”

Another reason I minimize it is because it seems like there’s so little I can do about it. Treating my depression has always had very limited success, so for that reason, I’m not too happy about hearing the diagnosis again.

Still, I admit that with all that’s going on in my life, I think that even most people without a history of depression would be struggling right now. Of course my husband having terminal cancer and not knowing how I’ll financially survive after he’s gone would cause my depression to return.

But knowing that it has returned just makes me worry more about the future than I already did. If they can’t help me now, they probably won’t be able to help me once he’s gone, either.

It really just feels like the return of my old self, which I worked so hard to overcome. It feels like no matter how long I think I’m okay, depression is always still there, waiting in the wings to overtake me again.