#disabled grief

[rabbit-heart4]

I MISS MY FOREARM CRUTCHES SONMUCH AAAAAAAAAAAAAAAAAA I THINK KNEE SURGERY EXACERBATED MG EXISTING FATIGUE ISSUE!!!!! I STILL HAVE A CANE BUT I DONT NEED SOMETHING TO SUPPORT A LEG, I NEED SOMET&ING TO LEAN ON, SUCH AS FHE CUFFS ON FOREARM CRUTCHES GRRRR I HATE HAVING TO RATION MY ENERGY WHEN I GO OUT !!!!!!!!!!!!!!!!!!!!!!

[sopranoentravesti]

Man periodically I think about the people who supported the Ashley X treatment and wish them a very die.

(Un)friendly reminder that bodily autonomy is a disability rights issue as well as a trans and feminist issue.

[tinkerotr]

as inclusive and accommodating as i am, it still took me until now to accept that it’s a grieving process, going from engaging with myself as able bodied, to disabled.

The amount of things I miss doing but that bring me no joy because they are painful, is so confusing. The frustration I feel whenever I’m faced with a new inconvenience i hadn’t experienced yet, because my body can no longer do that thing, is hard to get over.

Growing up and developing as unknowingly disabled, because of how high functioning i was and because of cultural reasons, has brought damage to my body but to my mental health mostly. it’s like i have to interact with a whole new person that i still don’t understand what she needs, and that frustrates me more often than anything.

and that makes me sad. there’s a little girl inside of me who was never attended to the way she needed, who felt pain and thought it was better to hide it, so that she’s easier to love. this little girl deserves to discover what she can and can’t do without judgement, and I want to try my best and offer her kindness, compassion, affection, and acceptance. She did everything for me, she kept me going to this day, i owe her that much.

grieving has many facets, and it’s often for the living.

[newkittypoom]

how nice it must be to not be disabled. how nice it must be to not feel at the mercy of your support system, who have the choice to walk away at any time from you, for whatever reason. how nice it must be to be able to live independently. how nice it must be to not need the constant aid of others to get by with daily living activities. how nice it must be to not need to create elaborate systems just to function. how nice it must be to be able to report your symptoms to a doctor and be told that there is a procedure that can cure the problem. how nice it must be that the cure doesnt rely on your willpower and determination to make yourself better, that an external source can improve things for you. how nice it must be to be able to look that cure in the face and say, no, id rather not after all.

[hanslwrites]

A Fruitless Wish

Would you scream with me Drive through the night The flickering fear of my wish growing with the shadow of every streetlight we pass along the way Where are we going...is it any better than where we've been?

Would you scream first When the sound sticks in my throat So desperate to open up that I shutdown at the magnitude of everything so long held in I can't, I can't, I can't - my usual refrain echoing endlessly inside my head A habit hard to break (don't let go, play nice, stay quiet) I can't. My voice breaks instead (I break a touch more with each second I deny myself)

Would you scream louder and longer Holding steady, an unwavering faith that I will join you (holding me steady without a touch) Your voice a rampage of emotion...what does it say? Is it my rage reflected and given over so much more easily by you? Is it a rallying cry? Telling me over and over: let go, just let go Or is it another thing entirely? A love song too raw for words

Would you scream with me, just because I asked No persuasion required, no second guessing My request a call to action taken up immediately Your pleasure evident at any way to help, however strange or brief

We can't scream forever, if I can scream at all But that journey would be taken together A string of moments that might make a little more sense of the world If only to us, if only for my heart feeling a little less broken, despite the rest of myself

[traumatizedmathilda]

“Stop pretending,” they would shout back before resuming a diatribe about why I was a terrible person because I couldn’t be there for them exactly when they wanted me to be. After each of those conversations, I would cry. If this was how my loved ones responded to my disability – would anyone ever understand and accept it?

[vulpine111]

Earlier this morning, I fell asleep again and had another dream about Felix and Florian. It hurt because in it, they were asking me to eat with them and talk things out. Upon waking, I remembered they'll likely never want that because I have a brain injury and they only love(d) who I was before I hit my head. I've been trying to paint something to express how much it hurts to be tossed out and ignored like garbage because I am disabled, and my overall grief surrounding the disabled experience, but I need to start over. I am going to paint over the big canvas I tried on because what I did manage to get out doesn't measure up to my standards. It looks pretty bad, actually. I'm so frustrated. Eventually, I am sure plenty of people would love to see me turn something as disgusting as their inability to love me into something beautiful, though!

[chronicallyjune]

The lull of September doesn't last long

The market sale ended up going well!! I ended up using some of the money to get some clothes that are more in line with my current vintage style, very nice. Lots of people said they liked my style and bought from me, I can't wait to sell again. It was a good way to turn something I'm known for and possibly seen weird for into a little bit of power. I was very grateful to my friend for helping me watch and manage my table, he seemed to like some of what I had too. (I would never convert someone to the vintage brain rot shhh)

Onto a different subject: grief

I don't want talking about this heavy topic turn into personal venting but I think it's important to talk about the experience of grief and mourning when you are disabled/chronically ill/neurodivergent/traumatized etc. I think a lot of able bodied and neurotypical people have expectations when it comes to grief and the loss of loved ones, especially the expectation that everyone will express these feelings in a similar way. As someone with a chronic illness on top of neurodivergence, I experience grief in a way that could be seen as atypical. I've already spent so long morning myself and my physical state in some small way every day, and I know what waits for me at the end of the path. I also have a hard time holding onto flimsy hopes and chances, I'm not big on believing in miracles. What seems to effect me the most emotionally (besides the stress which I'll get there in a minute) is the feeling of grief in others. The weight of grief in a room and in the air and over the phone becomes choking for me as a highly empathetic person, I tend to absorb other's feelings on the matter. Taking on all this usually leads to a lot of stress that effects me a lot physically and sometimes staying out of things is better for me personally because of my physical health. Even if it upsets others, my health and boundaries are important this time around. Last time I went through this I was sick for months, and I can't let myself get like that if I can help it. Its hard watching my body take on this stress outside of my control but I am prioritizing myself as much as I can. The company and support of friends has been good.

Now for something else~

I have some plots for small oil paintings soon perhaps, I want to paint more for myself and personal inspiration more. I think it's something I deserve as an artist. I can't decide if i want to buy some cheap canvas or gesso pages in my sketch book (much harder to let it dry). But I've taken reference images I want to use for a small personal project. Once I get caught up and get past this work section here maybe I'll do that. (I need ADHD meds that work badly)

[clementimetodie]

recently saw someone's "advice for your 30s" which included something like "never get on the floor without having an escape plan for getting back up" and um. if you are otherwise able bodied and having trouble getting up from the floor in your 30s. you are very unhealthy. yes, even, if not especially, for that age.

[jayne-hecate-writer]

Mountains... revisited

As a former climber, mountaineer and maniac for mountain sports, it was a joy to come back to the mountains once again, this time in a completely new way.

My dedication to mountain sports was prematurely stopped by illness and disability and so I sort of came to the conclusion that I would never see the mountains again. However, a strange series of events, the love of my friends and family and a determination to give it a shot, led to my return to the Snowdonia mountain range after a gap of twenty years. Obviously this came with a cost and that was in pain and suffering. My body has taken the hit surprisingly well, with only one minor meltdown and a complete failure to comply with my demands. However, this is why we have pain killers and comfortable beds.

The trip started with strapping my faithful friend, Sylvie my Suzuki SV650 to a trailer on the back of my car.

With some glorious company in the form my wife, her daughter and her daughter's girlfriend, we set off on an adventure. Well once all of the annoying mechanical problems had been fixed! We won't go into them here, but let us just say that my patience has been truly tested.

Our adventure took us to North Wales, a place that I loved with a lot of climbing passion back in my twenties and thirties. This year I turn fifty and to be honest I am not sure how I feel about this. I am clearly no spring chicken, but I resent the idea that I am old, I still have toys, albeit big shiny silver ones and I am still very silly with my toys.

Carol rode from our home in Somerset to Wales on her trusty Kawasaki ZRX1100, a true beautiful beast of a bike and Alice rode her Kawasaki GTR1400, a machine that is a mix of sports bike and comfy sofa. The ride up was fun, but the wind on the bridge across the Severn was terrifying. The poor little car felt like it was going to be thrown off at any time.

We arrived safely at a beautiful little farm and set up base camp in a converted grain store. The roof was hilariously low and sloping, but inside it had a basic luxury that was joyous. We unloaded Sylvie and prepared for the week ahead. Our first ride out was a gentle local ride, taking in my old play ground of Tremadog. I spent many happy (and some terrifying) moments on the climbs at Tremadog and enjoyed camping in the field behind Eric's Café. To my utter horror Eric's has gone, replaced by some modern, electronic self service, anti-climber hipster shit hole. With security cameras, huge warning signs and strict private property notices, it has become a hugely unwelcoming place and with a heavy heart we quickly left.

The following day was the big ride out, the trip to Snowdon itself. More correctly known as Yr Wyddfa, the mountain is the second highest in the UK, being around 1030 metres above sea level. I have spent many happy hours playing in this region, climbing some of the classic lines and basically living in the moment. To return on my motorbike with my beautiful family wiped away those frivolous memories and gave me new, happier and more peaceful ones.

The ride was glorious, the roads were hard work, but I loved every second of it, even when I got beyond exhausted and moved into migraine territory. The last ten miles was the hardest, most demanding motorcycle riding I have ever done due to how poorly I was feeling and there were moments when I simply had to grit my teeth and hope for the best as I twisted my throttle and went for an over take. Once back at the house, I boiled over into a grotty, shivering, crying mess and after swallowing incredibly strong painkillers, retired to bed.

I have no regrets, the riding was amazing, even though it caused me a lot of pain. Sylvie was faultless and my little family were beautiful. So despite the pain, I could not be happier. I no longer have this chasm of grief in my heart for the mountains. Instead, I have softer, kinder and happier memories of being truly at peace with myself in an environment that I truly love.

All photo's have been provided by my partner Carol, for which I am very grateful. A feature length Youtube video will no doubt follow soon given that both Carol and Alice are film makers of some talent. Until then, just know this. No matter what happens from now, in this moment, I am truly happy.

[nebulow]

It almost seems like non-disabled people have a harder time accepting when a chronically disabled person will never get better - and maybe even deteriorate over time, than the affected person has.

"Aww don't lose hope"

There is no hope to be had? Stop pushing your toxic positivity down my throat when I have come to terms with my situation and am grieving already.

Losing hope is what has given me an ounce of peace of mind. This is what life is now. It's not your grief, it's mine.

[scissorcraft]

so. rescuing kittens, huh.

[chroniclesofchronicillness]

Very true.

[positivelyqueer]

hey, if you’re feeling upset or grieving over your disability or chronic illness, I’m here to sit with you. It’s okay if all you feel is hurt right now. You don’t have to rush to look for silver linings and disabled joy. Those things will be there when you’re ready. Right now we can just sit together and grieve what could have been, what was lost, and the hurt that we experience in the now. We’re going to get through this together.

[exeivt]

becoming ill/disabled is hard. changing your whole life around to a new routine and new normal is hard. complaining is okay. being angry or upset is okay. it's normal. all that matters is that you prioritize yourself and keeping yourself safe. don't let that anger turn too far inwards. don't let the grief drag you under. there will always be things in life to enjoy and love that will be within reach. always.

[cosmiccripple]

one aspect of disability that people don't often talk about is grief. grief plays a massive part in my life.

before becoming disabled, i had so many dreams that i know now aren't feasible. i would have loved to go to uni and pursue a degree in psychology and go on to become a therapist, but i know i wouldn't be able to go to uni now.

i'm grieving the could-have-beens and what my body used to be like.

i used to like running short distance and i loved dungeons & dragons. now, i wouldn't be able to be present long enough to actually play a campaign, and the last time i raced my mate down the road, i ended up in bed for the week in a flare up. (i'm an idiot i know)

grief is such a big part of being disabled that people don't talk about enough.

i'm proud of my disabled identity. i never fully recovered from an illness and gained multiple chronic illnesses/lifelong disabilities from it, so damn right i'm going to embrace the changes, but i will always think about the what-ifs.

my disability is a part of me as a person and my identity but that doesn't mean that i still don't grieve for who i was or could have been.

i am not less worthy because i am disabled and i can still grieve and be proud of my disabled identity simultaneously.

thanks for listening to my TEDtalk now i'm probably going to take a nap because writing all that really hurt my arms and i'm tired.