A few years ago I started writing about Belinda’s medical journey when I realized that people didn’t really know what we were struggling with. It helped a lot to have friends and family understand how it was a serious issue and not just a passing thing.
This morning I feel compelled to do that again, on a separate issue.
Ben has been without work for just over a year now. I was able to get by, struggling along with the surety that he would find work in his field again soon. We are still struggling by, but now our credit cards are maxed, our credit score has crashed, and I’m not sure what I’m going to cut.
The situation.
Ben is a computer scientist. A mainframe developer. He’s trained in legacy systems like COBOL (the language financial systems run on) and also has experience moving systems off of the mainframe to newer languages (although he personally thinks that COBOL is superior). He is also neurodivergent in some way. We don’t know exactly what, and he doesn’t want to be tested and categorized. I get that. But his neurodivergence is making it apparently impossible for him to find work in his field any more. He spent 28 years with the same company, only to have them push him out after the transition to the new system. Now he gets interviews, but doesn’t do well and doesn’t get the job. Again and again, and it’s crushing him. I believe it’s the neurodivergence, but I don’t know how to help. I tried to spruce up his linkedin, but that didn’t go great either. He is SO SKILLED and would be an incredible, faithful asset to any company, but he isn’t “normal” enough to ace these interviews. So that’s a problem.
Why doesn’t he go get a regular job in the meantime? Well, he has to have a job with benefits, or else some kind of contract labor that would pay enough to get health insurance on our own. He’s applied for contract labor programming jobs but so far, no luck on those either. Any new job needs to include comparable health insurance or pay enough for us to lawfully maintain the coverage Belinda’s care requires. Until then, we are following program rules to keep her treatment continuous. We have looked at jobs outside of mainframe that have benefits, but he doesn’t get those either. He has even applied for jobs that, after paying for gas and the employee insurance, would still come out negative once we account for total costs of care. But he still tried for them and didn’t get them.
I have also applied for a few jobs, although I don’t know how that would work. I am my mom’s primary caretaker. Sarah is also here and I drive her to school and pick her up most days, and then I take her to her doctor’s appointments and therapy and tutoring and things after that. She is still playing catch-up on a lot of things and will be for a long time to come. I also still take care of Belinda’s medical, even though she is 18. It’s just too much for her. So I take her to appointments on school breaks or attend three-way virtual appointments with her. She has another procedure in DC in December and I’ll be accompanying her on that.
Belinda is high functioning autistic. Seems to be something that runs in our family because she, Bennett, and Lenora were all diagnosed. And then me. I had no idea, and since I homeschooled them all, it wasn’t on anyone’s radar. Sarah had been diagnosed in elementary school. I thought that probably Bennett had adhd, and when he started vo-tech and was having trouble we got him tested. Lenora was also having trouble in college. And when they were both diagnosed with adhd, Belinda was tested. And at some point all three of them were diagnosed with autism, and I finally realized autism isn’t always Rain Man and that I had it too. It took extra tests to get mine identified. The psychiatrist said that I have a very high IQ (like…he said it several times) and that was how I had gotten away with my masking for such a long time. One thing that I see now that shows I am truly autistic – when the psychiatrist said that I was in the top 97th percentile of the population, I nodded but wasn’t really interested since that’s exactly how I used to score in the old California Achievement Tests they gave us in elementary school. And then he stopped, and explained how that is actually a VERY BIG DEAL and then I realized he wanted me to be more impressed with that information and so I acted like that was very interesting so he would be satisfied and we come move on to the rest of the results. It worked, we moved on, and looking back, I was still just masking. And I do this all of the time.
Anyway. I write for the newspaper and get paid by the story, and that hasn’t bumped us over the financial limit yet. Our only other income is the oil/gas royalty that I get from my portion of our family farm. It’s not a huge amount but it has been able to keep us afloat, albeit at the poverty line. It goes up and down. A few months ago it dropped enough that we were able to qualify for government food assistance. We received that for two months until the shutdown. Ben and I also visit food pantries each week. I have two I usually go to, and he does one for me on Wednesday nights so I can take Mom and Sarah to church. (Although I haven’t been getting them to church at all lately…it’s gotten to be so much to have to take two people who are difficult to get there. I miss it.
We were pretty broke when Ben lost his job. Lenora had gotten married that summer, and we had spent money getting our bathroom redone (our house is super old and there was actually a hole in the floor, so it was definitely time to do it). We’d also spent money on Lenora’s last semesters in college. A lot of money went towards Belinda’s diagnosis of achalasia, and the battle we went through to get that figured out. Then came the additional diagnoses of Ehlers-Danlos, MCAS, and POTS, and all the different appointments and things we had to go to for that and to get on top of those diseases. So we went into the joblesness with pretty much nothing. Some people in our church and some friends helped us raise the 3000 we had to have to continue COBRA insurance for Belinda’s second surgery, which was Nov. 5, 2024 (Ben lost his job on Oct. 31 and health insurance stopped right then; thanks for that, former employer of 28 years).
So now? I go to food pantries. I have the EBT card, which will maybe start up again. I keep finding new ways to keep things going. Belinda has gotten grants from the National Organization for Rare Diseases, which is how we are able to pay for hotel and ground transportation in DC. A charity called Mercy Medical Angels has gotten us flights twice for the DC trips (once in last November and once next month). Soonercare (Medicaid) has approved Belinda’s out of state procedure and may be able to help with some other expenses while we are there. I’m still looking into that. I found that the insurance carrier we have with Soonercare, Humana Healthy Horizons, offers some value added benefits, and one was a once-a-year assistance with utility bills. So I was able to get that for all three of us, and that helped us keep the electricity on and the propane in the tank. I also was able to get emergency medical utility assistance with the state through the Liheap program, because we have life-saving medications that require refrigeration. That’s once a year, but thankfully it started over in October so I was able to get it in September and I am currently trying to get it approved for November. We follow every program’s rules, report changes, and keep documentation for anything we use.
Mom is considered her own household. She has her own separate suite and entrance and pays her own expenses. Sarah is counted with her dad for benefits purposes, but the school here knows her situation and helps with what they can — she gets free breakfast and lunch and sometimes take-home food boxes, and they’ve reached out about holiday needs too. I’m thankful.
All of this stuff is very difficult to do. The help is there but it is hard to get it. I don’t know how poor people do this all of the time. This year has been so stressful. Every time I need to talk to someone about SNAP or Soonercare or Liheap I have to call and be on hold for hours. The people are lovely when I finally get through but it’s rough that they can’t have chat or email or something. But that’s not how it works. There’s so much to research – like the rare diseases organization or the medical flights. No one helps you find these things. It’s sink or swim. The people at the food pantries are also so lovely but I am definitely experiencing fatigue of this whole thing. I thought this was going to be temporary but now I don’t know what to think.
Belinda’s internist has written a letter stating that she should be considered disabled because of her many issues. I keep going back and forth on whether I want to apply for that with the government. There are a lot of benefits and I can’t really find many negatives, so maybe it’s just the thought of it that I’m having trouble with. But I also know that if I had known that I had the same issues as her (minus the achalasia) when I was younger, I would have wanted to have applied for it. I still would have wanted to work as much as I could, but I would have understood that when it all got to be too much for me all those years ago, it wasn’t that I was bad or lazy, it was autistic burnout. I know I said above that I have tried for a few jobs, but even when I do I wonder how I think I’ll be able to continue functioning when I feel like I am doing all that I can to make it through every day, without an outside the home job. I don’t have enough recent work credits to apply for disability myself, though there are other programs with different rules. Belinda’s doctor has written a letter supporting her case, and we’re praying through what the next step should be for her. But of course, I didn’t know I had any real problems back then, and instead I blamed myself for not being able to cope with both job and home life. But still I waver what’s the best thing to do for Belinda.
I do have a lot of issues too. I have had terrible hip pain for years, but Belinda’s diagnosis of ehlers-danlos made me think that was the answer to the riddle no one could solve. So now I know that in addition to autism and adhd, I have ehlers-danlos, pots, and mcas. I also have psoriatic arthritis apparently, I just had both things which is why the medication didn’t do much for me. At least now I know why I can’t sit in one position for more than a few minutes. It doesn’t have a solution but knowing makes it more tolerable.
What else? Well, back when we were middle class, we had the house rewired so we could have central heat and air for Mom. We got so far as getting the entire mother-in-law suite set up, and we got the system upstairs, but downstairs is still a window unit and propane heaters. Mom is downstairs now and it’s driving me crazy listening to her talk about how she is hot or cold and asking what she should do about it. And it’s going to get very cold this winter because there are still many holes in the walls of this house and when the north wind blows hard in the winter there’s a breeze and you can see your breath in the kitchen. I also looked into assistance with home repair but the questions made the whole Sarah and Mom situation difficult to explain, plus Ben R and Lenora in the mother-in-law suite, and so I gave up on that. I’ll just try to tape towels over the cracks where they’ve come loose again.
The house is such a mess. When Lenora and Ben R moved into the separate suite and Mom came to the downstairs area she has, most of her stuff came inside and we haven’t yet found a place for it. We don’t really have any storage space here, and I haven’t felt up to going through all of it. We also have quite a bit of food pantry food that is starting to take over. Mostly in the form of boxes of macaroni and cheese and peanut butter. We appreciate it and are keeping it for the future, but it’s hard to keep up with some of the items. Ben and I also have so much stuff everywhere. Too much clothing, too much furniture, too much medical stuff, too much paperwork, too much stuff. Hard to let go of anything when you don’t have money to replace things though. My latest plan is to try to fit all the downstairs clutter upstairs and then not let any visitors go up there, even for the bathroom!
Our credit is maxed everywhere. We stayed away from credit cards for as long as we could but finally we had to use them starting in the summer. Our electric has a cut off date on it (I should be able to take care of about half of that with state assistance but I don’t know where the other $800 is going to come from – the holes in the walls contributes to this). We owe the propane company over a thousand dollars. I would estimate that we probably are about 15,000 in debt at the moment. I pay the minimums and the late charges, and I add $50 or so to each one but it’s like a drop in the bucket. The credit cards were basically my last ace in the hole. Now that they are full I’m not sure how we will keep our heads above water. But I guess it has worked so far. Our home is paid for. I am thankful for that. Taxes and insurance are hitting hard but we have been able to make those payments at least.
In other good news, Sarah’s birth certificate is in the mail and when we get that we can finally get her drivers’ permit. That has been a huge undertaking and took five months to get done, and only happened because a suggestion from one of Sarah’s teachers that blossomed into an actual solution.
More good news – we are all alive and reasonably healthy. Belinda is doing well in school and is finally making some friends (hard for autistics) and is working to start a Pre-Law club. She is having difficulty with one class, biology, but she is working hard to keep her 4.0 average.
Belinda and I got her FAFSA filled out and even though it will show that we have too much income for a pell grant since it is based on 2024 income, I know that her school will be able to adjust that based on our current situation, like they did last year. Otherwise I don’t know if she would be able to go to school without huge student loan debt.
Our cars keep running. Belinda’s had an issue but Ben was able to fix it himself. He always impresses me with that sort of thing! He truly can do anything he sets his mind to. God willing, Sarah will be the fourth young person in this family to learn to drive in my van.
Our appliances all keep chugging along. Our washer and dryer, refrigerator, dishwasher, well pump, microwave – all these things keep going. A burner has gone out on the stove and there is a disturbing spot in the microwave where whatever coats the inside of the microwave has worn through and now it’s a big rusty spot, but it’s still working so far! We still can afford laundry detergent and dishwasher soap and toothpaste and other things that food pantries don’t provide. That’s good!
I decadently bought Chinese food for Bennett and I yesterday for lunch, and I have leftovers for today and tomorrow! This makes me very, very happy and I will probably watch a true crime documentary while I eat it, before I get back to actual work. My to-do list is always disappointingly long.
I have found a supplement that seems to be helping with my brain fog! I’ve had long covid since 2020, and the brain fog has been horrible. I still have a little of it, but it’s so much better. The theory is that the fog is caused by inflammation in the brain, and this supplement helps with inflammation. My hips are also hurting less, and the orthopedic surgeon I went to last month said that the supplement also helps with arthritis pain and other inflammation issues. Hooray! I must be able to taste and smell a little more too, because I now smell it when Nutmeg has an accident. Poor old kitty but I’m glad I can smell it and fix it!
I’m starting to feel optimistic about my writing again. I’ve been reading a ton (thankful for libraries) but I think the supplement is also slowly opening me up to the possibility of creating stories again.
Lenora and Ben R, and Bennett and Mia are happy and thriving in their marriages. The last two nights I have dreamed that my old “Garvie Fam 5” was together and the first night we were in an escape room that was a whole house, and last night I dreamed that we were at a tourist town and we were in a treasure hunt. I love Ben R and Mia and I’m so glad they are in our family, and I love Mom and Sarah, but I do miss the old family days. My eyes are tearing up as I write this. It has been hard letting go of all three of them in the same year. Everything has changed so much. It’s been so hard. But I have to keep fighting the good fight.
I need prayers. I need prayers badly. Please pray:
–For patience for me. With Mom, with Sarah, with Ben, with people who don’t understand, and with our situation. Mom just came in and asked me if it was all right if she got up now and I was a bit short with her because I’m writing and I feel bad about that. I have to do better.
–That I will figure this out, despite my brain which apparently does not work quite in the best way for modern life.
–That Ben will get the job God wants him to be in.
–That the upcoming trip and procedure in DC goes well.
–That Mom will keep what memory she has.
–That Belinda will get that A in biology.
–That Ben will feel better mentally and emotionally and take better care of himself physically.
–That poor Nutmeg will figure out the catbox, or that I will figure out how to get her to it in time.
–That I keep coming up with ideas for stories for the paper, that the paper keeps letting me write them, and that the readers enjoy them. Those little checks that pop up at the middle or end of the month, right when things are about to hit the fan, has saved us more than once. God is good.
–That I take better care of things here. My adhd gets the better of me a lot and I don’t get Mom to wash her face or brush her teeth or take out her partial or any of that stuff. And I don’t remember to tell Sarah to do those things as well. Sarah won’t be able to get braces if she doesn’t step up the oral hygiene. Nobody showers enough. Sheets aren’t changed enough. I don’t cook real meals enough. The house isn’t cleaned enough.
–That I figure out what to do with Mom’s caregivers. We have someone who comes over twice a week, two hours at a time. I’ve made it known I want Mom cleaned up and showered once a week, and that I want her sheets and laundry washed once a week. I also want them to play Scrabble with her. But mostly they just sit in the next room and watch TV with her. I appreciate that I can go and get Sarah without having to find someone who sit with Mom, but it’s not what I asked for and I don’t know how to fix it. I would be happy to do more hours if that’s what’s needed or whatever, but I mean…Ben could sit in there and watch The Lone Ranger in there with her for free.
–For the theater here in Tuttle. I give a lot of my time to the arts council here, making social media art and doing other little things, but the whole organization needs help badly, mostly financially. I was trying to write grants but ran into a hitch. I need to find time to do that again.
–For Lenora and Ben R. They’ve decided to move out and I’m going to miss them terribly, but I want everything to go wonderfully for them!
–For Bennett and Mia. They haven’t been going to church either and I worry about that. I’m praying they are in God’s will and that He blesses their home with abundance and joy.
–For Sarah! I just got a call to set up an appointment for Sarah for food aversion therapy. She’s the pickiest person I’ve ever known, and that is coming from a very picky person. Pray that it goes well and that she can get over this obstacle. She needs lots of prayers.
And finally! Belinda just messaged me this happy news from college. Her biology professor said this morning: “Can anyone but Ms. Garvie tell me what plant cell walls are made of?” That makes my heart so happy! She’s studying so hard for that class and it is paying off. She’ll get that 4.0 yet!
If you made it this far, thank you. I know it was ridiculously rambly and complain-y, but it does feel good to let it out sometimes. I try very hard to keep everything looking like it’s completely fine and I don’t know how to let people know when it is not, while still being socially acceptable. Darn autism again! But it is who I am and I am thankful to be me.
Through all of this, I am still thankful. God is taking amazing care of me and of my family and loved ones. I know this. And one day maybe I’ll look back on this from a much easier spot in life and continue to praise God for everything. And maybe it will be worse then. Who knows. I hope no one gets the idea that I will not be okay through all of this. I will. I just wanted to talk about it.
<3
