I write this for me.
That I am sharing it with you is a miracle of sorts. There was only one other time I allowed my "vanity to vanish" in the face of such pain and darkness. That post can be found by clicking here.
Or if that link doesn't work, try this one: https://lifewithautisminpictures.blogspot.com/2014/09/doing-away-with-vanity-dignity-tonight.html
I want to remember how I felt on this day, so that days, weeks, or months from now when I've healed, I will be able to look back and see what great works God has done.
I don't even think this picture does justice to the pain I've been feeling for a while now.
No, not that pain, that cruel, relentless, hideous, nighmarish pain of watching my son suffer in his vaccine injury "Life with Autism, Seizures, and a side of PANDAS".
Rather the pain my body is feeling from the chronic, continual, equally cruel stress of having absolutely no consistency. No balance. No me.
Yeah, that sounds pretty selfish. "No me".
I get it.
I've read the books where it says it's not about "me".
We warriors get that.
In fact, the past year has so not been about me, my body has rebelled.
It has said enough.
Problem is, there is more.
That's the beauty of this life with vaccine injury. It is a beast that keeps roaring. It doesn't understand enough. It demands more. More time, more money, more attention, more sacrifice. It demands everything you have, and then it demands even more.
And so I find myself in this state of such pain.
My stress-relief, my joy, my 'life is worth living now' moments were the times I walked in Nature.
Now, those walks bring such pain that I cry most of the way walking.
My legs, one in particular, has had enough. This after months that my hands have said they had enough in the numbness and no strength at times. Now it's my left leg particularly. All those months of no Day Program because of "COVID" - the barely two hours to myself without Brandon I walked as fast and far as I could. No time for stretching. No time for relaxing. Just time to do essentials of stress-relief, which for me was walking. I couldn't even alternate with swimming for....balance......because the gym closed at 5. Because of COVID you know. Virus' are more active after 5 and they are far more deadly from the parking lot to your table at a restaurant than they are while you are sitting at the table. I wouldn't really know that - we never got the chance to go hardly to test that theory out.
I don't want to come across as a complainer or seeking pity. That's what's so hard about trying to raise awareness about the lives so many like me live. To adequately share the hardship, challenge, stress, cruelty - it does come across as that. Mainly because you can't adequately share how hard this life is without sharing one year-long loop of the daily imprisonment. Or in our case for the last year, the solitary confinement. We do live in a prison of sorts. Our lives so confined by what our loved one with vaccine injury can tolerate. What he can tolerate, who he can tolerate, where he can tolerate. For us that pretty much leaves us home, alone. The Day Program our only other consistent that he could tolerate. And with the flip of a mandate, that was ended. Leaving us with our solitary confinement. If Brandon had no where to go, then neither did we.
All those months I could slowly feel the stress burning through my body.
I tried to do what I could, when I could, but it wasn't enough.
It's never enough.
That's the other dimension to the cruelty. I'm never enough of anything that I need to be to others that in a way I just quit trying. The guilt is too all-consuming. To go walk when my husband gets home, because that's the only time I can -- guilt. Guilt that I can't spend more time with my Grandfishy. Guilt that I can't serve others in ways I would like. Guilt that I can't help Brandon more because there simply isn't any more money to throw at the ravenous beast of vaccine injury.
Guilt is pretty much the fog blanketing each morning that I wake up to the reality of what this past year taught me.
All the money on all the studies done on families like mine that all come to the same conclusion that we need respite, we need to take care of ourselves -- but never one penny spent on how to make that happen.
Which leaves me like, well, me.
In such pain because of no time for self-care. I could make the time, but then the times I had to make that time, is the only time I could even see my husband. For me to make the time to take care of me, I have to forsake him. The times we can beg and pay someone to care for Brandon so we can see our Grandfishy, means we have to forsake that time doing something together, just us. I don't know how to stress this enough - that there isn't time in our severe brand of vaccine injury, to 'have it all'. Brandon's care is 3 shifts. And even though we are the exception in having found a day program to even accept him the 5-6 hours he actually makes it there on the days he isn't having a seizure - it still isn't enough for "us" because my husband has to do this little thing called making a living during the day.
I've felt so isolated and invisible since last March - I'm sure the reality of that didn't help much on top of the stress of not one outlet away from Brandon. My time was spent literally begging for crumbs of respite, then the guilt of when we had it - wanting to just rehab my body instead of going out to eat with my husband. Sure, a few times we did go swim together. Everything we both wanted to do together or individually, had to be crammed in 2, 4, or 6 hour intervals because we never knew when the next opportunity to come.
Respite was a form of stress in just the guilt of that!
Typical families have choices.
We had crumbs.
To even sit together to eat at night was stressful, the constant interruptions from redirecting Brandon or getting him something he needs.
I think my body simply reacted to what my mind could not comprehend in how cruel it is to know that your only support can be pulled right out from under you on a whim. And how there is absolutely no other alternative for families as severe as mine. I begged places to allow me to bring Brandon there, but the answer was always no. He's too severe. He needs too much supervision. Too much care.
I begged for help finding a home for Brandon, those prospects were even more dismal.
The reality of this being my life for the rest of my life, broke me.
My nerves, my hands, my legs.
I suffered in silence for weeks, months.
I tried to "hush until I healed" but the pain was so great it did spill out now and then in too much transparency in how disappointing it is, was, that those places in this world designed to serve & encourage, were instead silent & distant. I have never felt more invisible. My warrior tribe excluded. They know. They know what this life is like, and they are the first to help a fellow warrior not fall. Or at the very least be first to help pick you up when you do inevitably fall.
I try so hard to be that "NDCQ" ambassador living out the "Life is Tough, BE TOUGHER" - because I so believe in it. That mental attitude, that mental toughness, is why I'm alive, and will be until the LORD calls me home. Until the LORD calls Brandon home. But I just don't think even that does our lives justice. We never get off our battlefield. We never get to mourn the loss of suffering, ours or our loved one's. What is so hard to put into words for typical people, is how we are relentlessly on our battlefields. Constantly watching our loved one suffer. There is no reprieve, except those stolen moments of calm or respite. There is no time to reload. There are no reinforcements.
There is just us.
And the guilt that consumes.
I had some "loyalty points" for staying with my gym through the COVID closure.
Once my leg hit a threshold of pain I couldn't stand anymore, I had no choice but to put myself first. Even that statement is misleading. I get to put myself first only after I get Brandon to his Day Program. If it's open. If Brandon doesn't have a seizure and can go. Planning ahead is impossible. How can I schedule an appointment if I don't know what that particular day will bring? If Brandon will be up in time? My only certainty is to do those things when my husband is off work. Which again begins that endless guilt cycle...
So, I went to the Chiropractor. Doc reassured me I wasn't dying, because that's how the pain felt. He stated the obvious in how out of balance my body was. He suggested along with his adjustments, I go get a deep tissue massage. Yeah right. Another thing to feel guilty about. Instead of time with my husband, my Grandfishy, I now had another flaming sword to juggle and feel guilty about.
But I had no choice. I can't go on in such pain. So I eventually made the appointment.
I have never had a massage before.
That's probably a whole other blog to describe that experience that was both the most relaxing yet painful experience of my life! Laying on the warm table with the weighted warm blanket with such relaxing music and essential oils diffusing made me forget everything but that moment right there. I don't think I've ever felt like that. Just a total relaxation with not a thought of autism, seizures, PANDAS, being a loser wife, mother, grandmother.......
Just total emptiness of thought.
And then she would hit the muscles and I would remember why I was there.
At one point she told me she felt like she was massaging a brick.
And by the bruises I had the next morning, I believe her!
I'm doing all I can to try and heal the bands and flexors in my legs that are so tight and pulled and out-of-balance.
Doing all I can in trying to get back to being able to walk without crying.
But it is hard.
We simply do not have the luxury of being able to take care of us, our husband, our family, all that we have to take care - with the huge elephant of vaccine injury in the room. It demands to be first. It's simply too big to shove out of the way.
So I don't know where that leaves me.
I know I need to take care of me while there's still a me to take care of.
It's painful enough to care for someone who is suffering so much for so long.
I can't be in pain doing it and hope to survive as long as I need to for him.
Sadly, we warriors are the only ones who get that.
Hence my faithfully fumbling.
I am fumbling.
But I am determined to remain faithful.
My target in life is that I believe my faith will collide with God's faithfulness.
Life is Tough.
I have no choice but to be TOUGHER.
To the #HOPEISM of that --
I share this because whoever is reading this, knows someone personally who lives a life like I do, who cares for someone with autism, seizures, PANDAS....
They need encouragement.
They need help.
They need to be able to take care of themselves, but they can't without help for their loved one.
They need enough respite opportunities that they don't have to do as we have done, have to choose between time alone, time together, time with family/grandchildren, time to do chores that need to be done and can't be done with constant interruptions.....
We're really good at holding people up who are going through short-term suffering, mourning, ailments.
But for those of us whose suffering is lifelong - it sucks.