I am not afraid to die –
but I am not yet
unafraid of living.
I’m not sure I have ever written truer words than the 3-line poem above. This little gem came to me while taking a bath last night, so I repeated it to myself like a mantra until I got out of the tub and could write it down.
It is true that I am not afraid of death. I am a bit afraid of the actual feeling of dying, mostly because of the instinctual anxiety I fear it would bring. However, I am not afraid of being dead. In fact, I rather look forward to it. If there is something after death, it will be awesome to explore and find out what else is out there. If there is nothing after death, it will just be like the times I have passed out or been put out for surgery…simply a loss of consciousness which often sounds like a relief in itself. No more worrying. No more pain. No more anxiety or depression.
However, living is scary. Knowing I may have years and years of dealing with anxiety and depression ahead of me. Knowing that I will likely suffer from chronic pain and chronic illness until I die. Knowing that my degenerative conditions will likely worsen with time. Fearing that my husband may get sick or die and I will be alone. Fearing financial ruin. Fearing homelessness. Fearing potentially abusive situations. Fearing the entire planet going to shit (a justifiable fear from my point of view). Fearing that I may end up committing suicide if life becomes unbearable (not the ending I would desire for my life).
Feeling like shit today. Woke up after sleeping 10-11 hours, ate breakfast, and then went to take a nap for another couple of hours. So, why am I so exhausted and feeling like I got run over by a steamroller?
Well, yesterday my husband was driving home from work when a tire fell off his car. I had to go pick him up and once I got there, we had to wait for the tow truck to come get the broken down car. It was supposed to be about an hour before the tow truck arrived, instead it was almost three hours. Three hours of sitting in the cold (we did turn on the heat in my car occasionally, but didn’t want to run it the entire time we were waiting). Three hours of sitting in a position that is not good for my back, neck, and joints. Three hours of my joints stiffening due to the cold and being cramped in the car.
I knew today I would feel rough after all that and expected my CFS/ME and Ehlers Danlos to flare up. As usual, I was correct, but I wish I wasn’t. Those who don’t have chronic illness and chronic pain have no idea how easy it is for normal, annoying life events to set us back for days. I think it is something you have to experience to truly understand.
Sorry I didn’t update you all yesterday after the hearing, but I was just too exhausted mentally, emotionally, and physically after the stress of the day. Overall, I think the hearing went ok. It didn’t start out very well since my husband and I had trouble locating the right building and ended up walking through the thick, slushy snow so far that I had an asthma attack, started crying, and was totally soaked from the knees down by the time we actually found the right building. The roads were bad too from the snowstorm and parking was almost impossible since none of the parking lots had been cleared yet.
Once we got into the building, I had a few minutes to recover from the asthma attack and calm down at least. I also had about 15 minutes to meet with my lawyer before the hearing to go over everything again. During the hearing itself, I was quite nervous. I was doing a lot of rocking back and forth (“stimming” in autistic terms).
I think I only had the nerve to look at the judge two or three times the entire hour I was in there. I mostly stared at the microphone and tried to block out everyone else there while answering questions. That seemed to help my social anxiety. I think I did a decent job answering the judges questions…and she asked a lot. I never lost control of myself, although in my closing remarks I did tear up a bit and got a little emotional talking about how hard it had become for me to keep a job due to my physical and mental disabilities.
Unfortunately, the judge did not tell me her decision yesterday. I will have to wait to receive the official verdict letter. On the positive side, my attorney did say afterwards that he thought it went great and even on the off chance that the judge gave a negative verdict, he thought I had a strong enough case that he would appeal that. I hope it doesn’t come to that though, God only knows how much longer that would make the whole thing drag out…and quite honestly, we need the money as soon as possible, especially since I just got a $1,500 ER bill (our deductible sucks).
Tomorrow morning is my SSDI hearing. I’m super anxious about it. I feel a little nauseated just thinking about it. I’m afraid I’ll do or say the wrong thing. I’m afraid I’ll burst into tears and feel embarrassed. I’m afraid I’ll somehow misrepresent my reality. I’m afraid the judge will say no and ruin my foreseeable future.
I know the judge probably won’t even give a straight “yes” or “no” answer tomorrow, but that makes it even worse because then I have to wait who-knows-how-long in suspense and worry. I hope I’ll feel better when it is over, but knowing me, I’ll probably spend the next few months picking apart the experience and everything I think I did wrong until I get an answer.
I’m a paper doll
with third degree burns.
Dress me up,
make me pretty,
and please, simply ignore
all the raw, peeling flesh
falling onto the floor.
(Poetry by Maranda Russell, marandarussell.com)
Well, my one-day migraine from Wednesday turned into a four-day migraine that I finally had to go to the emergency room to get rid of this morning. They pumped me full of a bunch of drugs that did take the worst of it away, although I must admit I’m scared it will come back once those wear off. They did give me a steroid shot to help stop rebound migraines, so hopefully that will work.
I’m exhausted and somewhat depressed about the whole situation. I went at least a couple years with barely any migraines and then this just pops up out of nowhere. I can’t help but think part of it might be all the stress about my upcoming SSDI hearing. I try not to consciously think about it, but that doesn’t work so well for obsessive minds like mine.
I’m sure you guys understand that this will be a short post since I’m not feeling too great, but here is a picture of an extremely ugly, grumpy stuffed lion for you to enjoy:
Ugh. Turns out we have to replace the entire water heater. Over $1,800 (which we can’t afford)! This seriously sucks. To make matters worse, the guy couldn’t put the new one in until today, so we had to go all day and night without any water at all (they had to shut it off entirely due to the enormous leak). The guy said he would be here around 11am to put in the new water heater and it is now 12:30 and no sign of him yet, although he says he’ll be here soon.
Due to all this I am grumpy and feeling yucky and just want to whine lol. I can’t even flush the toilet!!! I know this may seem crazy to non-autistic people, but the huge change in my daily routine has driven me freaking crazy and brought on a nasty IBS flare. God, I hope this is over soon.
This seems like a good time to remind everyone that I do have a PayPal donation button set up on my blog if anyone ever wants to send a few bucks to help out or support my blog. You can donate any amount and don’t even have to have a PayPal account of your own. You can find the button on the right side panel of my blog home page, or access it through the Support My Blog page. If you are able to help out, that is great, but if you aren’t, your kind thoughts and well wishes mean the world to me.
Yesterday I had rather a bit of a breakthrough moment. Now, to most people with healthy backgrounds and relationships, this will likely be a bit of a “duh” moment, but to people like me who were groomed to be codependent caretakers, it is an immensely important realization.
My “eureka moment” can be summed up in one sentence:
I don’t owe anyone ANYTHING, and no one owes me ANYTHING.
Of course, this does not mean that I can’t give to others out of the goodness of my heart, or that they can do the same, but none of us should feel required to do so. I would say the one exception to this rule would probably be children. If you bring children into this world, you do owe them something – and that is to do your best at providing them a safe, stable, and loving childhood. I guess pets fit that category as well. If you sign up to take care of something that can’t care for itself, you are essentially accepting that responsibility.
Outside of that, I’m not sure if any of us should feel like we have to fully take care of others emotionally, mentally, physically, or materially. We all have a responsibility to do our best to meet our own needs, and while that may mean reaching out for help now and then, we have to realize that sometimes we may be turned down and that is ok. If so, we just need to keep looking I suppose.
As someone with disabilities though, I do want to say that I do feel it is vitally important to have public programs and assistance available (whether these be government or charity systems) for those of us who sometimes struggle more than others at being “functioning adults”. To me, it is just a simple matter of society welfare and empathy that should strive to help anyone who falls through the cracks.
The Comfort Trap
By: Maranda Russell
The comfort trap
has closed around me,
its cold metal arms
crueler than a vice.
But don’t help me out,
for I’ll only find
a creative way
to crawl back in.