Saturday, February 21, 2015
An Emotional Toll
With how charged vaccine news has been lately, I've wanted to chime in and respond several times to what I've seen, read or heard. But the more I wanted to write, the less I knew what to say. It's been somewhat overwhelming. Emotions can come in handy, but not the emotions I was feeling.
In the last few weeks, I've started so many posts in my head. When I've found time to sit down, I've been able to start writing some of those posts. But I end up either deleting everything I just wrote, or I get up and walk away from the computer.
I knew I needed to step away from the media's orchestrated vaccine debate and did so for a few days. It helped. I felt refreshed and ready to catch up on some things that I'd missed. I was sad to discover that instead of dying down, vaccine news was even more heated.
Before I took a break, people from across all walks of life were chiming in about vaccines. Even more were doing that when I logged back in. I'm all for a debate and for sharing information, but the heated arguments and the insensitive insults being lobbed at parents like me was disconcerting.
Those who do not have a vaccine injured child may not fully comprehend why some of us are asking the public to be cautious about vaccines. We want them to learn about vaccines. Study them. Ask questions about them. Understand everything you need to know about them. Everything. Including that they don't always come with benefits.
After going through several emotions watching the news recently, I thought I'd share a post that I wrote two years ago. Maybe it will shed some light on why I encourage others to educate themselves fully on vaccines. Vaccines come with risks, with side effects, and for some, regret.
The Role Vaccine Side Effects Have on the Caregiver
Side effects and vaccines. That was the topic of last week’s Sunday post. It was more of an introductory post, really. Much more information can and should be shared regarding vaccine side effects. As necessary it is to expand on that information, today’s post isn’t going to be a continuation of the medical side effects that I’d touched on last week. So, I won’t be listing every single vaccine on the market.
I won’t post every single side effect of each of those vaccines starting with the mild to the moderate and then the severe.
I won’t prove how utterly dangerous vaccines and their side effects can be.
I also won’t share that $247 billion* has been awarded by the US government to those who’ve experienced a vaccine injury or death.
I won’t mention that from swelling at the sight of inject, to being diagnosed with autism, to dying as the result of a vaccination, side effects and adverse reactions demonstrate that vaccines truly are unavoidably unsafe.
Nope. I’ll save all that for another day.
Instead, today’s post is going to focus on someone else: you.
So, let’s begin.
You, who after witnessing vaccine side effects firsthand in a loved one, have been more than willing to tell others that some vaccines aren’t worth it. Their physical pain and your emotional involvement is a lot to endure. As the vaccine injured learns to live with their side effects and their altered life plans, so have you. Side effects bog down. They deny advancement. They steal hope and destroy healing.
But those side effects won’t be found on a package insert.
They aren’t included in the fine print of a slick magazine advertisement.
They also don’t need to be disclosed or legally reported by the doctor, nurse or medical technician either.
Similar in ranking, the side effects that afflict a caregiver can be mild, moderate and severe. They can be painful, and they most certainly can last over a great deal of time.
Now, in sharing the side effects that a caregiver goes through is in no way meant to detract from the serious physical nature of the vaccine injury. But, I think it’s important to talk about the caregiver’s as well because those side effects do exist. Because side effects can cause delay.
Because they can affect someone physically, emotionally, financially while reducing their abilities. And, like the actual vaccine side effect, the caregiver’s life can change, and does change, life forever. I know this because I am caregiver to a child with a severe vaccine injury.
Ronan’s side effects from his vaccines have lasted for years. For the most part, I feel like I have a handle on what those are and how to best manage them. But for my own? The side effects affect how I live and how I care for Ronan.
Take Ronan’s seizures, for instance. They’ve increased steadily over the last few months. As each seizure happened I began what felt like a post-traumatic stressful roller coaster ride of emotion. Knowing how seizures affect Ronan and how desperately I wish he didn’t have them, I went from spurts of sadness to feeling waves of depression.
For weeks I could not shake the extra negativity and the worry I had for my child, his situation and his future. Weeks previously, when things were going well, I had less worry and more of a can-do spirit. Triggers, like Ronan’s seizures, bring stresses to the surface. The more triggers I face, the less effective of a caregiver I feel I become.
I think many mothers go through these emotions, but having to juggle the additional medical and behavior issues, as well as my own unpredictable emotions, adds a great burden to an already heavy load. It’s no wonder that when Ronan’s health declines, when school days are tough, when negative behaviors pepper our once successful schedule, the more visible my caregiver side effects are.
Mild side effects, which can include emotions and also lead to certain behaviors, can be:
Moderate side effects a caregiver may experience:
Physical toll on one’s health
In no particular order, and with no limit to severity or duration, the caregiver’s side effects can have one feeling numb to escalating to a fit of rage. Each situation is handled differently by each caregiver. What affects one may not affect another. What can be consistent, though, is that just as the vaccine injured are ignored, forgotten and pushed aside, so will the emotions and needs of the caregiver. He or she will quickly take second place behind the vaccine injured person’s needs. That may not be a bad thing as the caregiver gives selflessly while constantly focusing on the vaccine injured, but not having an outlet to express or work through the heavy burden of caring for another’s health can come with a price.
Because of the type of care required for the vaccine injured—be it round-the-clock healthcare or one-on-one supervision, oftentimes the side effects a caregiver feelings and needs might go undetected. Eventually, though, if they’ve built up, a disaster may be looming. If the caregiver’s physical and mental health are affected, things can take a turn for the worse, not just for the caregiver, but also for that of the person they are tending to.
Severe emotional side effects might include:
It would be easier to do what needs to be done for the vaccine injured individual without emotions, without the side effects, without the trauma and without the reminders of why things are the way they are. But emotions are part of life.
I go through several emotions myself depending on the situation I am facing. If I have a relapse, like what happened when Ronan’s seizures surfaced again and could not be controlled, I’m brought back to the early days. To the days when nothing made sense. To when no one I talked to could help. To when nothing was working.
Those moments of anguish bring me down to a low that can be very difficult to handle. But, after I fall into that despair, and as I work my way out of the hole of helplessness, I benefit from the other kind of caregiver side effects, the kind that will save my mental and emotional health and will help me refocus on Ronan and his needs.
Unlike the vaccine side effects, the caregiver’s side effects pose a positive side:
-the desire to want to be further educated
-the discovery of talents never before realized
-the ability to advocate effectively
-the networking with others to create useful programs and products that will help the vaccine injured
-the craving to pay it forward
It would be ideal if more positive came with a vaccine injury for both the vaccine injured and the caregiver, but that isn’t the case. Finding the positive and building upon it requires works. Work
and pushing through the negative is possible, but it has its drawback. For me, drawbacks come when I revisit how this all happened. That happens when think about what Ronan’s lost and when I remember what I’ve had to endure, too. I try to suppress some of negative that comes with pushing through those memories, but suppressing glaring reminders of how quickly life changed has me cycling through a range of emotions instead of leaving one or two behind.
If Ronan’s vaccine injury never happened, would I be who I am today? Would I ever experience profound moments of insight like I did when I was able to put two and two together about his health and his decline? Would I be part of a movement demanding changes to what our government deems safe and effective? Would I have learned a fraction of what I now know?
Would I have made and kept lifelong friends that I now depend on like family? I can only speculate what sort of life I’d be living if none of this happened.
Moving forward with what I have, with whom I’ve become, with those who’ve helped me get to this point in life is what I should focus on because I can’t rewind to Ronan’s baby days to when the needle plunged his chubby thighs. I can’t take away what was given to him. I can’t turn back time to when I was ignorant. I can’t ask for a redo and research things that I never knew to look up on my own. I would love nothing more than to do that. I would love nothing more than to have the strength to help my child heal 100% also. But I have limitations that prevent that.
Despite those limitations, I will always be Ronan’s Mom. I am here for him. I celebrate when
he celebrates. I make progress when he makes progress. I hurt when he hurts. I cry when he cries. Parts of me dies when he struggles, when he deteriorates and when he fails. My abilities and his inabilities are woven together as are his emotions and mine. It makes us stronger one moment and undeniably weak the next, but no matter what emotion, side effect or situation we are facing, I’m here for him. Always.
*As of 2 Feb 2015, the current payout for compensation is $3,090,780,181.43
The Role Vaccine Side Effects Have on the Caregiver was originally posted on Age of Autism in December 2013.