Random thoughts

I looked up whether it’s possible to make a lot of money from writing for Medium and it’s really not—usually only a couple hundred bucks a month. From there, I followed links to how to make a lot of money as a writer, and it was all the same old pitching ideas and constant self-marketing that I hate and have never been able to do successfully.

It’s kind of ironic because I know that I’m a good writer. My pretty much immediate success in writing for Medium only surprises me a little (mostly in that I expected it to take longer to find success.) But the very first thing I ever wrote got published in a book that was a compilation of essays, and I’ve been on the masthead of a couple of different magazines. I do kinda know that I’m talented, though I still feel incredibly obnoxious in saying so.

And I probably indeed could be very financially successful if I wanted to turn it into my personal form of hustle culture. But despite that, I just have no interest in doing so. My writing voice is incredibly shy and gets scared away easily when I start trying to make a lot of money from it, especially when rejection enters the picture. I guess that is what it is…but it also makes me hopeful that I’ll be successful when I finally start writing books.

On a totally different note, tomorrow is Mother’s Day. My husband already got me roses and we’re going to drink mimosas and cook on the grill tomorrow. I’m painfully aware that this is the last Mother’s Day when all my kids will still be living at home.

I asked J today if I was really a good mother. (Maybe it’s common to wonder that? I actually have no idea if it is or not.) I was admittedly not a great mom for most of the kids’ elementary school years. To the same degree that I connect really well to teens, I just can’t connect to little kids very well. I’m so awkward about it. I found ways to delight in things my kids did when they were little, but for the most part, I just really didn’t know how to relate to them.

J asked me what I liked about each of the kids. I told him that I like Amy’s passion for causes and her dedication to the people she cares about. I like Adam for their gentle and sensitive personality and the way they genuinely care about wanting better lives for all of humanity. And I like Dylan for his tenacity and willingness to work hard to achieve goals that are important to him.

Then J told me that those are all character traits that they learned from me. I guess he’s right, but it still surprised me. Overall, I just often feel like J is the superior parent to such a large degree that it’s sometimes hard to see any good traits that the kids get from me.

But as he pointed out, there’s often a line outside of my office most nights after he goes to bed, in which the kids are waiting to talk to me. So I guess that’s something.

However, Amy is never one of the kids waiting to talk to me, in part because we’re on different schedules. I feel like I’m not as close to her as I could be…but she’s also 23 and I remember that I didn’t feel particularly close to my mom at her age, either. I just hope it won’t take her until she’s in her 40s to want a relationship with me, like it did with me and my mom.

Oh, wow! I’m blowing up!

So I’ve shared the links that I’ve shared to the 3 articles I’ve written so far for Medium. The first 2 had a couple hundred page views; not too shabby, but certainly nothing I’d ever be able to make into a career.

The most recent one I wrote, The Cultural Lie of Mother’s Day, was chosen for greater distribution today and since then, it has absolutely Blown. Up.

An editor of an online social justice magazine contacted me and asked if she could publish the article, saying that she would be “honored” to do so. (Little did she know that the honor is really all mine, since writing essays about social justice topics is pretty much my greatest dream as a writer!)

I secretly hoped that eventually, one of my articles there would get some major attention, but I just didn’t expect it to happen this quickly. I am so excited to keep writing and to see what happens next.

On another note, I picked up a part-time job grading English/language arts essays and I sailed through training. I had to pass several sample grading tests, using the criteria I learned to apply to each one, and I nailed it, scoring 100 percent on all of them.

Things indeed do look a lot better today.

Feeling sorry for myself

I don’t often get in this kind of mood and I know that probably a lot of it is just that I’m really overtired. I’ve been pushing myself pretty hard since this past weekend and I just started a new part-time work-at-home job grading student English/language arts essays. But despite my better judgment, I’m going to indulge in a rare bit of venting/whining.

My disability sucks; that’s all there is to it. Maybe this is a delayed response to finally finding out what I really have; I don’t know. But I’m learning all the little ways that my disability is progressing and realizing that most likely, I’m never going to get better. The reality of that is really weighing on me heavily.

My left arm from my elbow through my forearm has been sore and exceptionally weak for a couple of months now. I told myself that I was probably just repeatedly sleeping on it weirdly. But it turns out that it’s actually a symptom of one of my diseases and probably isn’t ever going to go away.

Because I still wasn’t ready to admit defeat in terms of trying to get off of disability, I applied for a full-time job at home doing TV captioning for the deaf. I got to the point of doing extensive assessment tests for the job and I easily passed all of them except one, the one that measured my reaction time in response to hearing cues.

The recruiter wrote to me and explained the situation, saying she’d give me another chance to take that part of the test, since all the rest of my scores were so good. But nope, I still couldn’t pass it even on my second try.

The weirdest part about that whole thing is that I’m 100% certain I would have easily passed that section even just a couple of years ago. Based on that, I can really tell how much I’ve lost skill-wise in just a couple of years.

In the day to day of things, I don’t often notice my limitations and I still think that I’m capable of doing all the same things that I used to do. Times like these are a rude awakening that remind me that no matter how much I want to believe that I’m still capable, believing that doesn’t make it so.

I’m asking myself all sorts of questions, chief among them being why this had to happen to me. Why couldn’t the faulty genetics have been divided up a little more fairly, with me and my sister each getting one of these diseases, rather than me getting both?

And in truth, I’m honestly scared of the fact that both of these diseases are progressive. If I’ve lost this much in just the past few years, how much more will I lose in the coming years? How will I ever be able to take care of myself when my husband’s gone and my condition gets worse, when there are already so many things I just can’t do now?

I know these questions have no answers. I know life is random. And I also know that for the time being, anyway, my life is still pretty good despite these challenges. Worrying about the future won’t change any of it. I just wish, with every fiber of my being, that I had more control over my destiny.

At least I can still read and write (even if I can’t write by hand anymore.) If I ever lose those abilities, I really don’t know how I’ll cope.

Now it’s time to go to bed and see if my outlook is better when I wake up.

“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.

Mothers

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.