Note: At the beginning, in the middle and at the end of the day we are site about autism. Today I want to share Michelle Guppy's very personal update posted on From Hell to Hopeism, her blog that follows life with a severely affected adult son. Her handsome Brandon. Wracked with seizures. Tall. Blond. Smile that would fell a sorority house if he could ever have gone to college. He, like so many of our "kids," is home with Michelle and her husband. Every day. And COVID is taking a toll on them.
The entire world changed literally overnight for COVID. For those of us who have been in the autism world for going on decades, it's a kick in the teeth knowing the government can effect change (for better or worse, and we won't go there today) while all of us have been left behind and not just ignored, but vilified. It ain't right.
By Michelle Guppy
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.
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. READ THE REST AT FROM HELL TO HOPEISM HERE.