Hell Seeks Hopeism: How One Autism Family is Struggling During Covid
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.
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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.
Trust me.
In fact, the past year has so not been about me, my body has rebelled.
It has said enough.
No more.
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.
Michelle you are a very strong and courageous mother and I also have an adult son with autism who has been home since March and we have no time for ourselves as we are totally consumed with caring for our son 24/7 and it has been very stressful for our whole family. I pray every day that a miracle cure will be found to cure our vaccine damaged and disabled children and adults. You are not alone and there are thousands of us all going through the same hell trying to keep our sanity as we care for our very special children. God Bless us everyone.
Posted by: Gayle | January 29, 2021 at 04:05 PM
Dear Michelle, I am glad you spoke. We have been struggling in the current situation, as never before. Will, our non-verbal 19 year old with intractable epilepsy, severe chronic insomnia, severe dysbiosis, etc., etc., is still in school. School is the only respite offered in our state. In March the school shut down in-person classes. For the first time I felt like I was suffocating... Will's school insisted that we, his parents, continue Will's education while the teacher would watch us on zoom. That meant that Will with his uncontrollable grand-mal seizures, OCDs, and anxieties had to be sitting in front of the computer screen all day long trying to learn something.... It also meant I could not get Will's food ready (cooking everything from scratch and organic), order supplements and medications, made appointments with Will's multiple doctors, do further research on possible medical and/or developmental interventions, continue with my own job, do laundry, vacuum and clean the house (allergies to dust), take care of Will's legal papers, take a shower, and even go to the bathroom. My husband was teaching on-line while frantically scrambling to redo his classes at a non-teaching time of day and night. During the night, Will would not sleep, which meant we could not sleep either. I was so exhausted, I was not going to make it. I started calling the Governor's office. There I learned the state did not forbid 1-on-1 care in a person's home. In school Will was in a classroom with one more student, 2 paras and a teacher. Five people in a huge room. Why did they close it? Could they send a para to work with Will at home? The answer was "No! The schools are closed." I started calling to various state and local human services and education departments. Their answer:
"We are sorry for your hardship. But everyone now is in a hard situation".
My answer: "NO! We WERE in a hard situation before COVID. Now we are in an UNBEARABLE situation. We are not going to survive this. PLEASE, HELP US!"
Their answer: "We'll see what we can do".
No one ever called us with any help till this day. No one even called us to find our whether we were still alive.
Posted by: Williusha | January 28, 2021 at 11:59 AM
Love and prayers to Brandon, Michelle and the family. Hoping things will look up before too long.
Kim, would it be possible to write that we have been affected by the Lockdown, rather than "covid", without opening the dreaded can of worms! Nobody should be able to quibble with that, whereas some of us, such as me, get agitated when anyone says "covid" has caused this.
Posted by: Grace Green | January 28, 2021 at 09:52 AM
Stop HR 350
https://upton.house.gov/news/documentsingle.aspx?DocumentID=401703#:~:text=The%20Domestic%20Terrorism%20Prevention%20Act%20of%202021%20would%20strengthen%20the,threat%3B%20and%20providing%20training%20and
https://schneider.house.gov/sites/schneider.house.gov/files/DTPA%20of%202021.pdf
Will they criminalize telling the truth about vaccines?
What is the legal definition of "white supremacist" ?
Stalinesque stuff.
Posted by: Emmaphiladelphia | January 28, 2021 at 01:37 AM
TRUTH TELLER
Straight out of the Book of Job.
But it does have a happy ending.
Posted by: Emmaphiladelphia | January 27, 2021 at 09:44 PM
Michelle, my heart goes out to you. I wish I could help in a concrete way. but all I can offer right now is this: You said that "I'm never enough of anything that I need to be to others." Last weekend, the pastor where we went to church said, " Only God can be perfect. We can't be perfect, but we *can* be righteous."
I believe that you are one righteous mother.
It is an almost impossible journey you are on, and an almost impossible challenge to take just enough care of yourself (finding the treatment, just one time, to walk without pain!) to be able to give all of yourself to your family... It is something the average family can only get a glimmer of, but you are navigating it.
I see that we are both believers, and I pray that through Christ, you have the strength to get through another day, and that through the Spirit, you have the wisdom to know when you personally have taken enough punishment from the world and can lie down for just a moment and get that massage or whatever it is you need. I will pray for you and for your family, especially your beautiful son. May everyone receive the justice in the next world that has not been meted out here.
Posted by: TOB | January 27, 2021 at 10:31 AM
Yep, that's it alright, in a not-so-pretty nutshell. Thank you Michelle, for having the courage to put it out there. Not that anyone outside our community cares.
Posted by: anonymous | January 27, 2021 at 09:43 AM
Thanks for sharing Michelle, really sorry about your leg and Brandon's condition. I read A o A for articles like yours and that's why I'm finding the 'donate' button this morning. Hang in there, ndcq, that's all we can do some days.
Posted by: drymeadow | January 27, 2021 at 09:38 AM
Doctors, nurses, and pharmacists who vaccinate are no different than those who work at chemical companies who dump the day’s leftovers. The only difference is the receptacle used. Whereas the latter dump their poisons and toxins into our waterways, the former inject their poisons and toxins into the bodies of our children, the elderly, and now even pregnant women. Both do it for the bottom line, with callous disregard for the downstream effects and how those effects will destroy health and life.
Thank you, Michelle, for sharing your pain and suffering, for detailing how the demands of raising a child with severe and permanent vaccine injuries are relentless, for exposing the inhumane lack of care and justice the vaccine injured and their families experience and endure, and for proclaiming your faith and trust in the Lord through it all.
So many mission fields right here in our own country which go unrecognized.
Posted by: Laura Hayes | January 27, 2021 at 08:07 AM