Keeping a good mindset

I still belong to several FB groups for MS, even though that’s no longer my diagnosis. I feel like it’s necessary to stick around to remind people that the diagnosis doesn’t mean that they’re doomed.

I do feel like it’s acceptable for me to say such things, even though I don’t technically have an MS diagnosis anymore. In all actuality, what I really have is worse than MS in many ways. And I still think there needs to be more voices in these groups, telling people (especially those who are newly diagnosed and scared) that having MS requires some adjustments sometimes and although I have undoubtedly gotten worse over time, it’s largely up to you to have the mindset that you still have a good life anyway.

I may rub some people the wrong way by saying this, but a lot of people in those groups (as I’m sure is also true for people in other illness-focused support groups) often seem extremely negative. I can completely understand how newly diagnosed people would get more scared of their future, especially after reading a lot of those posts.

I get it that I have advantages some of them do not, such as a supportive partner and the fact that I don’t have to push myself to work a physically demanding job. I don’t mean to sound unsympathetic to their struggles at all.

But I can also tell that some people are just constantly in “poor me” mode and have made their illness a big part of their identity. For example, it’s a very common thing for people to get “MS Warrior” tattoos. I obviously wouldn’t get one for a number of reasons and maybe they’re somehow empowering to those who have them. But the truth is that most of them seem anything but empowered. It’s not like they get these tattoos encouraging them to keep fighting and staying positive; it often seems more like they want a permanently visible reminder of what they’re going through.

If that works for them, good, I guess. But to me, it seems like defining all of the complexities of who you are as a person by a health condition you have makes me really sad.

In truth, I’ve probably lost quite a bit in the 9 years since my official diagnosis—most significantly that I can’t work full-time anymore. Still, I choose not to focus on what I’ve lost, but on what I can still do instead.

I get it that sometimes the effects of chronic illness do really suck and sometimes it feels better to vent about it. But I also see a lot of people who never seem to have good days in the midst of their struggles, and I think your mindset has a lot to do with that.

My chronic illnesses do indeed sometimes suck but it’s rare that I spend entire days feeling sorry for myself. There’s so much more to me than my illnesses. I just think about how I want to be remembered and it’s damn sure not for complaining about my suffering. I want people to say, “wow, she accomplished so much considering her limitations.” I want people to be amazed by my perseverance and positive mindset.

Millions of people around the world deal with some type of suffering, many of them suffering far more than I do. I’d honestly rather see what I can do to help those who are genuinely suffering than sit and wallow in my own.

Just grateful

I know, if I looked at my life a different way, I’d be able to make a good case for why I’m doomed. My husband has stage IV cancer, I have two progressive neurological diseases that are both getting worse, etc. But I don’t feel that way at all. I actually feel pretty damn grateful.

One small reason is that my youngest asked me tonight at dinner if we could leave immediately afterward to pick up his girlfriend. She’d had a major fight with her guardian and wanted time to cool off. I said of course.

Then he told me that he hoped I didn’t mind but he already told her it was okay even before he asked me, just because he was so certain that my answer would be yes.

I love everything about that. Part of it is because he and I are close and he can usually predict how I’ll react to stuff. (He’s a lot like J in that regard.) I also love it because there was probably a time—by now long ago—when the kids probably wouldn’t have been as certain of my answer, because I was a lot more unpredictable and stressed out. It shows how much progress I’ve made.

But the reason I loved that the most is because this is always the kind of parent I wanted to be, the one my kids’ friends could come to and know they would be taken in, no judgments and no questions asked.

I discovered that since I had my micro-dosing-related breakdown about my husband’s death, I no longer feel traumatized by it anymore. I know it will happen someday and I know I will be absolutely gutted when it does. But I’m now free to live in the moments that he is still here with me, without thinking about when he won’t be. That is such an absolute relief, I can’t even put it into words.

My youngest asked me tonight if I had tried micro-dosing yet and what I thought about it. Yes, I did talk to him about it beforehand. I was very conscious not to do anything when any of my kids were under 18, just because I was irrationally paranoid that they might be taken away from me. But I have always been very honest with them about drugs and alcohol and so far it has worked to demystify them (which was my intent.)

He asked if I would ever let him try micro-dosing. I thought about it a bit and said maybe. I then asked if he thought that made me the most irresponsible parent in the world (I’m sure some people would think so) and he said no. He guessed that it was a matter of risk assessment for me, which it is, and said he knew that if he ever asked me to try a cigarette, my answer would be a definite no. (Again, he was right—I struggled with nicotine addiction for much of my life and I would never, ever want to risk my kids going through it.)

I just feel like writing thank-you notes to so many people who have helped us along the way. Everyone from my youngest’s guidance counselor, who saw and encouraged the potential in him, to my landlord, who hasn’t raised our rent in five years. (I might send the thank-you note to the guidance counselor but not my landlord; I fear that the landlord might take that opportunity to raise our rent.) Not to mention all the people who made it possible for me to move down here in the first place. I have never forgotten my gratitude about that and make every effort to pay it forward.

I live in a beautiful home. It’s not remodeled to the newest finishes but that doesn’t matter to me. It’s in the neighborhood where I always wanted to live. It was once the up-and-coming neighborhood, where the upwardly mobile crowd wanted to live, but that was 20 years ago.

The character of the neighborhood has changed a bit since then in good ways. Some of the original owners are still here but I’m also surrounded by a fair number of middle-class immigrants, who bring diversity to my life. I can put hippie pro-LGBT signs in my yard and no one ever complains. I feel safe here. I would honestly stay here forever if I could (and who knows, I might, if my landlord doesn’t raise my rent.)

We have enough bedrooms for all the kids. I have an office for myself (or my husband to use when he works from home, which is sadly not often anymore.)

I have a great home life. We all get along pretty well. And every now and then, we get little treats, like the new living room furniture we ordered thanks to a generous gift from my mother-in-law. We have two reliable newer cars for the first time in our lives. We can afford to pay bills when they come in.

Life is just really, really good sometimes. I don’t want for anything.

Writing and breakthroughs

I’m still writing at Medium a couple of times a week and I’m starting to earn a little bit of money from it. I also like that a lot of what I write about seems to resonate with people and gets picked up for inclusion in various Medium-specific publications. That increases my exposure, which in turn increases how much I get paid.

I’ll probably never get rich from it but I really enjoy it and feel like it’s a really good creative outlet for me. It’s a way that I can write about what I want to without worrying about the money, and I am super happy that my creative voice is not dead after all.

But one of the most unexpected benefits of the writing I do there is that it’s actually bringing me and my mom closer together. I really, really didn’t expect that at all.

I share what I write there with her and she always reads it and gives me honest feedback. If she thinks that something I’ve written rubs her the wrong way, she tells me.

Such a thing happened yesterday. I shared this article I wrote about kids living at home until adulthood and her initial reaction wasn’t what I expected. It wasn’t that I felt pressured to change it but rather that I knew her suggestions would make it a stronger piece, which I think they did.

It was the way she responded to the revisions that are a clear example of how our relationship is changing. She said it was “exquisite” and “sheer perfection” and very impactful.

In short, I tentatively think that I’m getting the kind of relationship I always wanted with my mom. But I think I also had to trust her (since my writing there is usually very vulnerable) and I wasn’t always willing to do that.

Did my mom make mistakes over the years? Oh, yes. But she’s shown me that she also really wants to grow. In being willing to trust her with that side of me, she’s reinforcing that she can be trusted. I’m starting to let my guard down and it’s really good.

Revisiting past beliefs

I’ve never really stopped believing in God but haven’t wanted to call myself a Christian for a long time. At least 90 percent (my very unscientific number) of what Christians do, supposedly in the name of Jesus, is so abhorrent to me that I want nothing to do with it.

I’ll be honest that a couple things are swaying me in the form of belief, none of them scientific in any way.

One is that I’m discovering the much smaller number of voices who advocate for what I think Jesus was really like, in light of his teachings. It’s a Christianity that’s focused on the less fortunate among us and groups that have been traditionally downtrodden.

Of course, my number one issue in embracing any definition of faith is that it has to be affirming of LGBTQ people. I fully believe that LGBTQ people were born that way, which means you either have to say God made a mistake or condemns you to be celibate forever by virtue of how you were born. I just can’t buy either argument.

The other factor, honestly, is my sister-in-law. She’s come a long way from the fundamentalist Baptist that she was when J and I first got married. When she was here recently, she treated Amy absolutely no differently than she would have in the past. She just accepted Amy at face value.

She also made some comments about Adam, as though she thought they were trans, too, but Adam’s still working toward being comfortable enough to officially come out.

I guess what those encounters showed me is that it actually is possible to just love people as they are, full stop. And if you do so because you think that’s what God has called you to do, it’s a lot more appealing.

J has been reading books about queer theology and trying to make sense of the Bible from a pro-trans perspective. I respect that but at the same time, I’m nowhere near ready to read the Bible again myself. It’s such a flawed book, considering its many interpretations and misinterpretations.

Maybe someday I’ll get past that or maybe I won’t; only time will tell. But as for treating everyone equally, whether you feel God calls you to do it or you just feel like it’s right, it seems like you can’t go wrong.

I’ve always been generous and mindful of the plight of the less fortunate, and feel so grateful that for now, I’m not one of them. I don’t see any reason to change that.

Inconsistency

I’m feeling inconsistent with regard to my writing career again and I don’t know what I should do about it (if anything.)

I know that somewhere within me, I have what it takes to do well. The majority of my stories for Medium get chosen for further distribution and I’ve had a couple Medium-specific publications ask to reprint my stories.

Considering that I’ve only been writing there for about six weeks, this is already way more success than I expected to find this quickly.

The problem is that I don’t seem to have an endless well of good ideas. The article I wrote about how to raise good kids was one of my most successful stories so far. But I felt really passionately about the subject and that came across in my writing.

I don’t seem to do as well when I don’t have the same degree of passion about my topics. And frankly, that level of passion is not something I can make into a constant thing.

I don’t know if I should try writing stuff I’m not passionate about and see what sticks or if I should just keep writing things that matter to me, even if it’s more sporadic. I feel like I should be able to apply the self-discipline to write even when I’m not passionate about it but that also kinda defeats the whole purpose of writing for Medium. If I want to write things I don’t care about, I have my regular freelance work to fill that role.

Interesting after-effects

Suddenly I woke up today and my left arm was hurting significantly less than before. It still hurts a little, but if I were to use a zero-to-10 scale, it was at about an 8 before. Now it’s at a 2 or 3.

J thinks this very well could be because of the micro-dosing. Since my pain is most likely neurological in nature, it makes sense that something that shifts my brain (even just a little) could provide relief from that pain.

I also notice that I feel a lot better today. I was looking for some kind of afterglow effects yesterday and didn’t experience them, so I just wrote it off as though I wouldn’t.

I even (wait for it) don’t need as much time for napping today. I still had a hard time getting going but once I was up, I stayed up.

I even feel more motivated to clean.

I don’t know what this says about my micro-dosing experiment but I’m viewing it a lot more positively now.

As for whether or not I’ll eventually try taking a full dose, I’m still not sure. Since it is said to completely rewire your brain, I’m not sure how it might affect it that the signals in my brain don’t travel very well across my synapses. (That’s kind of what’s wrong with my brain in a nutshell: it’s like a normal brain is a series of connected highways and mine just has pieces missing.)

I don’t think there’s very much research into how psychedelics interact with brain disorders and I’m not sure I feel like making myself into a guinea pig. But on the other hand, what if it turns out to be something that makes me much better?

The things you see

So yesterday was my first experience with micro-dosing. I don’t know what I expected but it definitely wasn’t that.

I guess I do know what I expected. I thought it would make me able to get through a day without a nap. (Wrong.)

I thought it would lift my depression but that’s usually in the day afterwards, from what I’ve read. So I guess that remains to be seen.

What I didn’t expect: suddenly breaking down and sobbing around the time of the drug’s peak effect.

All the tears I’ve been suppressing through my husband’s bout with cancer finally came rushing out. I just suddenly realized that I really am going to lose him and it hit me with much more reality and gravity than it normally does.

I guess the way I can describe it is that when I usually write or talk about it, it’s almost like I’m describing something that’s happening to someone else. I feel very emotionally removed from it, if that makes any sense. And often my concerns are more pragmatic, wondering what will happen to me in the future. I very intentionally avoid trying to feel anything.

This time, I just cried and cried over the reality that he won’t be here.

After I got that out of my system, I did feel much better. In that way, I guess the micro-dose worked much like a session with a really good therapist. (Or at least, what I assume a really good therapist would be like. I’m not sure I’ve ever seen one but I still assume they really exist.)

I talked to my daughter about my experience and she said she thought that was the reason I wanted to do it, to confront my fears that I’ve been trying so hard to shove to the side and that I wouldn’t let myself feel.

Yeah, not so much. I really just went into it expecting something that would help me deal better with depression. And I suppose that confronting the things you’ve been suppressing is actually a good way to feel less depressed.

I’m still not sure how I feel about trying it again any time soon, though.

Some answers

In case anyone reading this actually wanted an update after yesterday’s post full of doom: it wasn’t the end.

I realized shortly after I finished writing that post that I had forgotten to take my Abilify in a week or so. I took it and those feelings went away.

I find it really pretty scary that one medication is that powerful. I don’t honestly know how I’ll ever be able to stop taking it.

My arm still hurts, though. I had my visit with my neurologist and she prescribed lidocaine patches, which did absolutely nothing. She also referred me for a test called an EMG, which will determine the extent of my nerve damage and may determine whether or not that’s what’s causing it.

If it turns out that it is caused by damage to my peripheral nerves, there’s nothing that can really be done. There are a couple of medications I can try for treating nerve pain specifically, but they all carry a fairly high risk of weight gain and sleepiness. Given the fact that I already sleep a lot, taking something that will make me even sleepier doesn’t sound good.

She also said that she did discuss my case with her colleagues (since they work at a teaching hospital) and none of them had ever seen a brain MRI that looked like mine before. I’m truly a medical mystery, which is not as awesome as it might seem.

On a different note, I did ask my husband about what my mom said, about whether he wants me to be more optimistic and hopeful about his cancer. Fortunately, he said no. He thinks that doing so falls into “toxic positivity” because it doesn’t acknowledge the reality of what he’s facing. That makes me so sad because it is the reality he’s facing but I tend to agree with him.

We don’t spend every minute thinking about his cancer and we try to make things as normal as we can. But as he put it, we know he is going to die from this, whether in one year or ten years. Pretending he might not is just unrealistic.

On yet another note, I did manage to get my hands on some things to try micro-dosing and I’ll probably take the first one tomorrow. My daughter has already tried it and survived and seemed very normal, so I’m not expecting anything radical. I think, if anything, I’m just afraid that it won’t work and that I’ll be underwhelmed by the results.

I do find that in general, I’m getting more curious as time goes on about the whole thing. It just seems like altering my consciousness might help me cope better with my current reality.

Not what I expected to be doing at almost 50 (gulp!!) but let’s face it: nothing about my life is how it to be (for both good and bad.)

Is this the end?

I don’t know what’s up with this but I’ve had this panicked feeling for at least a week that I’m about to die.

The thing is that I very much don’t want to die, so it’s not that I’m suicidal. If it’s a panic attack, I’ve never experienced one that has lasted so long and been so relentless before. I also have anti-anxiety meds and they’re not relieving this feeling.

Part of it might be due to health anxiety, since I mentioned the other day that I’ve had this intense pain and weakness in my left arm for about four months and it’s not going away.

I have an appointment tomorrow with my neurologist and of course, I’m going to ask her about this. The appointment is just by telehealth, so maybe she’ll ask me to come in and be examined in person. I hope she will.

I don’t know what it would take to convince me that I’m not actually dying. Maybe this is just a reaction to the news of what my diagnoses are. Maybe my diseases really are progressing rapidly, like it feels like they are.

Or who knows? Maybe all of this is just psychological. If it is just psychological, I really wish it would stop. Feeling afraid to go to sleep because I don’t know if I’ll wake up tomorrow really isn’t fun.

Reality vs optimism

My mom told me last night that I have too negative a view of my husband’s disease and that for his sake, he really needs to feel like he’s got this and he’s going to beat it.

I’ll have to ask him if he feels that way, if he wants me to be more of a cheerleader as he goes through treatment.

I guess I was sorta taken aback but she shared it as a difficult truth that she really thought I needed to hear.

On the one hand, I know the statistics about his disease aren’t good. Based on how he’s doing now, I don’t expect him to die anytime soon. In fact, I truly believe that his odds of being one of those people who’s still alive 10+ years after diagnosis are better than average, even though those people are the statistical outliers. I think that’s pretty darn optimistic as far as his outlook.

I do genuinely wonder if it would help J if I assumed he had lots of years left, if it would make him feel more encouraged as he goes through chemo. Obviously, if he said it would be beneficial, I’ll have to adjust my mindset.

At the same time, part of me thinks that the blind optimism is naive in the face of cancer. As I said, I don’t think he’s going to die soon, based on how he seems now.

But I also know the nature of cancer is wily and it is truly the one force of nature that can’t really be controlled. When it decides to take over, the treatments stop working. We’re not there yet. But to be honest, it’s never completely far from my mind, either.

I really don’t know how to navigate this space that I’m in. Do I try to prepare as though it could happen at any time or do I live as though it will never happen? I’ve been trying my hardest to find the in-between but my mom says that’s not positive enough.

This is by far the hardest thing we’ve ever been through together and unfortunately there’s no guide map about the way to do everything right.