#mitochondrial disease
Please submit photos, videos, illustrations, visual posts that show your real life, every day experience of the world as a disabled person. Whatever that may be! It can be anything from mundane every day things, your fashion, your selfies, your food habits, the things you enjoy doing, to the adventures you go on, basically anything anyone would ever share about themselves. It doesn’t have to be a 100% positive experience, though, as that is not real life. Any emotion, any experience. I’m interested in presenting what it is like for disabled people to live their lives.
Photos, videos etc. should probably include you, a part of you, or your actual Point of View to be a true depiction of you and your experience. They should also be clear, the subject matter should be recognizable, and relatively interesting to look at (if not downright hilarious commentary on the mundaneness of living life as a human being). If we want this project to make a difference it should be something that all kinds of people want to look at.Let’s burst out of our echo-chamber and refuse to be ignored!
Whatever else, you should be presenting yourself and your experience how YOU want to be presented. This is about both education and empowerment. I’m not here to dictate how you depict your life and what “Disability Is Normal” means for you.
No photos or videos of disabled people that are not you, please, unless it is a group shot that includes you and you are also disabled.
If you know a disabled person who wants their experience to be shared as part of this project please have them submit. If they are not physically able to submit, then please message me with a copy of their explicit consent - this would be either in physical signed form (a photo of a signed note), a video of them consenting, or a voice recording. A simple YES answer to a ‘do you want this to be shared on Disability is Normal’ - a physical nod, or thumbs up etc. is good enough for me if the person is non-verbal.
I want to try and be inclusive as is absolutely possible, but this is a place for us to be represented exactly how we want to be. These are our voices!
This is a project for all disabilities, all genders, all ethnicities, all skills, all lifestyles, all perspectives, all social classes and all disabled experiences. We are numerous, we are everywhere and we WILL be acknowledged <3
Please reblog, follow, boost and tag with your disabilities! Let’s get this off the ground - we can only do this together!
If you’re not disabled, please also consider boosting and following! Posts are queued at no more than 4 per day, will be absolutely personable, real, enlightening and interesting. Some posts may even hit your aesthetic tastes or personal interests! (;
By the end of yesterday’s two hour shoot the muscle weakness I suffer from was manifesting clearly. In my face, in my feet that would not pick up from the floor, in my arms that shook as if 50lb weights were hanging from my wrists. I know I ‘overdid’ it when muscle weakness persists into the next day, as does the unignorable pain that indicates cellular dysfunction. Today I can barely move from where I sit to the bathroom when I need to go. I cannot sit upright without total support of my body, my limbs and my head. I’m unable to separate my arms or hands from my body as I type this; only my fingers themselves are mobile. The searing burn in my upper arms and hands as I haltingly and weakly stab across this tablet’s touch screen keyboard is deemed 'exercise intolerance’ in medical terms. I dislike this term and find it misleading. Most people would describe exercise as a workout, or at the very least a good paced walk for a few miles. But, as with many words, what have one meaning in common lexicon will have another entirely in medicine. 'Exercise intolerance’ is a broad term with much variance in application among disease processes. For me, it relates to the muscular and cellular dysfunction I experience.
Today, just 2-3 chews on soft bread or a hand to my neck to scratch elicits a lactate burn from the pits of hell in the deepest depths of the muscles that are trying to activate. Many will be familiar with a mild form of this burn: usually as a result from running too hard, too long, or really, too much of any intense exercise in too short a period of time. It is, after all, a natural process. Some even pride themselves on this burn; it’s an indication for them that they are working hard. Lactic acid is a byproduct resulting from mitochondrial cells (energy production cells) using alternate forms of fuel when the correct sources are depleted. It is backup processing. This waste product causes pain, but in nearly all human beings this lactic burn will resolve within a couple of minutes to an hour once the exercise is stopped. (Other forms of muscle pain are different and likely a result of small tears, so take longer to resolve).
As long as I’m able to remember I’ve experienced lactate burn from as little as good paced walking, any amount of running, or even any kind of yoga or other mild activity. Now, as my conditions have progressed, the fiery pain manifests from even the simplest of daily activities; brushing my teeth, cooking, walking even 100m, propelling my wheelchair. It can last for days if I don’t get the correct nutrition, hydration, have trouble getting enough oxygen, don’t sleep enough or deplete my energy stores too rapidly or for too long a time. This is the price I pay every day now. Related, but different is the muscle weakness; the only outwardly visible sign that anything is malfunctioning.
I’m utterly exhausted writing this. I have to rest, but I want to thank you all for the supportive comments, the messages, the love. I have a hard time replying consistently for obvious reasons, but I read everything and I thank you. For watching, for reading, for learning, for your support.
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34th revolution of the sun complete. still looking more serious than I am.
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It’s been a year since the surgery to place this feeding tube. To the day. Originally there were promises of it alleviating symptoms but it quickly became clear, that in reality, this thing is just saving my life.
I’ve had no end of troubles with it since the very day it went in. Many of my problems with it have been atypical or rare; my experienced GI team having never even heard of them. Too numerous to list, and too complicated to explain with words alone.
At first this tube frustrated me so much it triggered some of the worst meltdowns of my life. Then there was the depression because of the lingering pain that should have disappeared when it healed. The anxiety of how this thing made my body look and how uncomfortable it was. Now it’s just there. It still causes pain, it still gets in the way. I still catch people staring. My body is still not a ‘normal’ one but then it never has been, so what is a tube and what is a stoma to such reality?
The things I live with every day with this thing 99% of people couldn’t comprehend. But now, it’s just me. A year isn’t a very long time in a life time and a year is even less time in the great big picture that is humanity. Still, in such a short time, it became part of me. 40 years ago I would have died from starvation. Now I can not only survive, I don’t even have to do it in a hospital.
At first, having a tube coming from a hole in my actual organs seemed barbaric (as does much of modern medicine). ‘Surely, we are more advanced than this?’, I thought. But, no, no we are not. Medicine is barbaric; it may always be that way. 40 years ago I would have died from starvation and now this is mynormal.
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I’ve spent so much of my time since my arterial rupture, neck deep in the medical system; barely treading water, but it’s gotten me so far. Things are getting close to as under control as they’ll probably ever be, given that my conditions are degenerative and progressive.
It’s time to really pull things around and live as hard as I can again. I think I’ve always done as much as I can to be authentically me, but this year I’m determined to get back some of what I’ve lost (whatever small amount I can). It’s time to restore balance.
I’ve already come so far in the past 3-4 months and after spending hours again this week wrapped up in medical stuff sapping my energy, I’m once again reflecting on when I can finally direct all my energy to my passions again. I may never have that luxury again, and I have to be okay with that, but what I’ve been pushing for this entire time, Quality of Life, is all about having the energy, time and freedom to have a life outside of the medical complex.
I’m almost there. I can feel it.
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Several times on this blog—particularly as my weekdaily posting schedule slackened in 2016 and 2017 and fell off to almost nothing in 2018 and 2019—I’ve mentioned changes to my life that have drawn me away from the computer: new radio show time slots, more work/life balance, more time at the gym, and even professional freelancing.
And somewhere in that list, you probably caught mentions of caregiving, and ambulance rides, and ERs, and long, long hospital stays.
I met @artisticlicensetokill—Katerina—at a radio station party in late spring of 2013. We were almost immediately inseparable, and spent that summer and fall going on road trips, playing games, and generally falling head over heels for each other.
And then one weekend in early 2014, she called me from Katsucon and told me she was having trouble walking and that she’d needed to borrow a hotel wheelchair.
This was our first brush with mitochondrial disease. I met her down at the convention and pushed her for the rest of the con. By the next week, she’d ordered her own wheelchair. And I spent the next five and a half years helping to take care of her and preserve her independence in the face of—once we’d gotten a diagnosis, which in itself took two or three years—a degenerative disease she knew would kill her.
Some people get a manageable version of mitochondrial disease. Kat got the version with gastroparesis, progressive organ failure, and profound muscle and nerve pain that left her in such daily agony she qualified for palliative care. None of which stopped her from loving life, traveling when she could, creating art, playing games, and making plans for a bright future.
Katerina passed away the morning of August 24. We laid her to rest in accordance with her Jewish faith on August 29.
She was this blog’s biggest fan. And I was—and still am—hers.
To support people still living with mitochondrial disease and to support disabled gamers in general, please consider a gift to the United Mitochondrial Disease FoundationandAble Gamers, two organizations Kat was devoted to. Thanks.
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