Social media has a way of concealing aspects of us that are otherwise unapparent in daily life. Unless pertinent to disability awareness or advocacy, I don’t often talk about having a physical disability, mostly, because it’s not important in my self image. However, in an unexpected way, bringing this up in conversation with somebody over the phone, can be an immediate, revealing snapshot of their true colors. Unlike chronic illness, people take a much more aggressive stance about physical disability; they either acknowledge it and move on or they say something blatantly offensive. The latter is something I experienced in a phone conversation last night. I somehow suspected this person would fall into this category despite other indications of integrity and charm; there was just something not right. And then, there was something very not right when he projected offensive, immature and amoral commentary about cerebral palsy. And just like that, I knew I would not waste any more time getting to know him. Funny how one sentence can change everything.
And yet, in the seconds that lapsed between what he said and my brain scrambling to believe it, I tried to make excuses for him. Maybe I had misunderstood. Maybe this was some kind of inappropriate but well intentioned commentary. But then I knew. The fact that anybody would actually even think this way, is offensive and demoralizing.
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Our need-based financial awards have been designated to supporting individuals with chronic illness affected by the Camp Fire. The influx of applications we have been receiving from the local hospital and social workers indicate the gravity of need in Butte County. These heart-wrenching stories of the loss of shelter, resources for daily survival for populations already struggling with illness has mobilized us to take action! Because of the gifts made Guardians of Hope, we were able to disperse the first award to a retired Paradise Elementary school teacher this week (pictured.) After a stroke in 2015, she has been unable to continue working and is in immediate need of support to help make possible for her doctor appointments, fill prescriptions and replace accouterments after losing her home to the fire. We are honored to support her in these efforts and thank you for making it a profound difference!
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Cured. This is what every individual with a chronic illness wakes up and goes to bed striving to be. Over the course of my lifetime, no practitioner or doctor has ever discussed with me if I can reasonably look forward to a life without illness. Mostly, I believe now, the reason for this is because they were never able to figure out really what has been led to the degradation of my health in the first place. But this post isn’t about their past wrongs, it’s about now. Over the course of what was a very emotional appointment this weekend with my nutritionist, we talked about the present and the future. Honestly, Joshua is somebody that is so incredibly intelligent and intrinsically wise that I have a difficult time trying to describe him. I can say, however, when I dissolved into a tangent rant about humanity being cruel and how deeply this breaks me on a daily basis, he listened intently just as he always does, then validated my feelings. Our plan for the next month is to completely resolve any lingering parasitic beings and all remaining bacterial infections.
Unfortunately, this isn’t going to be any easier than the past couple of months have been. He said there is no legitimate testing available at this point to conclusively assure us that the parasites and infections are gone. Is that the near future, I will be pursuing parasite testing from the most comprehensive analysis available. For now, we will be proceeding to a four week treatment that will give us undoubted reassurance of successful treatment after I make it through. We talked in great detail about the etiology of my problems, a conversation which I learned mind blowing information about health, the core of how disease starts and why so many of us have such a difficult role in healing. Wow. Just wow. Because my viral symptoms have re-emerged, he said this indicates the parasites are almost completely, if not completely gone. When they are present, the viral infections are superseded and cannot gain the upper hand and demonstrate symptoms. In order to eradicate completely all of my viruses, we must first evict every parasite, egg, and larvae. We are nearly there.
The best thing though, about this whole conversation is that he unequivocally believes I can be 100% healthy. 100%. Healthy. Cured. More beautiful words have never been spoken. And so, we keep going.
Expressing sorrow, disappointment, and anger does not make somebody a negative person. The grieving process of a chronic illness is continuous and therefore, so is the overwhelming sensation of mourning. The purging of complex emotions associated with this life is NOT negative, and actually necessary to the healing process. The societal pressure to be positive is a reflection of our culture’s inability to deal with others’ suffering. To smooth over authentic and valid feelings of hurt is to provide an emotional Band-Aid for other people, not for yourself. So, whatever method each individual chooses to detox emotionally from chronic pain, isolation and devastation, should be honored and appreciated. For me, writing has and continues to provide a sense of completion for past traumas and current injustices. Whatever manifestation your voice for speaking your truths assumes, don’t be ashamed to let it scream.
An open letter to the worst man I’ve ever loved:
As many hours and weary midnights I’ve spent castigating you for your moral failings, I’ve vaporized equal ridicule for myself. How could I have loved you? Even as the calendars change and the distance between our last goodbye grows, I’ve still hated myself for loving you. Whatever crimson flags frantically fluttered from your being, I either ignored or remained unseeing to them. Here is what I have learned in the past several years of reliving the trauma of your layered betrayal: there is no fault in love. The extension of compassion, enveloping another with cultured gentility was not a mistake. Your choices to compromise your own integrity cannot diminish mine. The cyclical dialogues I crafted to minimize the overwhelming love I had for you have finally quieted. I realize that in my attempt to discredit the potent adoration that I held for you, I was undermining The philosophical whimsy of compassion. Your level of deserving does not negate the sacred extension of love, my reaching toward you with genuine benevolence, no, not at all. So, today I do not hesitate to say I loved you. I loved you big time. Instead of dampering my vibrancy, this love, any love emulsifies my connection to this life. You may have been the worst, but you won’t be the last.