degenerative condition

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.

{please don’t remove my words}

Okay, deep breath. If you’ve read the acknowledgments in Six of Crows, you may know I have a degenerative condition that makes walking pretty painful. It’s called avascular or osteonecrosis and it showed up in my 20s. Pretty unusual for someone my age and in good health, but there you have it. Some days are easy, some days every step hurts like hell. The hardest part is not being able to do things I used to really love in the same way. Dancing, exploring cities on foot, running— ok, I never loved running, but you get the idea.

 Anyway, I realized my (ableist) reluctance to use a cane has meant missing out on a lot of good things, and that is some serious bs. So for the last leg (hey o!) of the Magic and Mayhem tour, you may see me with my @dellamorteco cane (technically a raven’s skull, Kaz would not approve) or my @lekiusa hiking cane.

 I’m not great at talking about personal stuff on social media, but I’m trying to be more up front about the situation. It’s part of the reason I wrote Kaz, and it’s not something I’m interested in hiding. My plan is to acquire a lot of awesome walking sticks and to be as candid as possible about the good days and the bad days. Thanks for letting me share both. And my sweet new mani.

Oof I’ve had the most rotten migraine since yesterday’s appointment. Just checking in to say, Happy Wheelchair Day! I had to overcome a lot of internalized ableism and self worth struggles before I finally agreed to try using a wheelchair. I was progressively housebound for almost two years before I managed to get to that point mentally. Having degenerative conditions and growing up surrounded by subtly and quietly ableist attitudes and worlds is quite a different situation to being injured or indeed growing up with the use of a wheelchair. All situations have their own challenges… My own was very much internal.

When I finally let my doctors know I was ready for a wheelchair they seemed relieved and very encouraging. Clearly they had been thinking it, but again, likely due to society’s ableist ideas had been reluctant to suggest it. My entire life has changed since I ‘succumbed’ to rolling around and it is 100% for the better. I feel so free and positive these days. I feel like I’m getting a huge part of myself back (and my upper body strength is the best it’s ever been which for someone with muscular and joint problems is a big deal!).

While I was absolutely housebound I strongly resent the phrase 'wheelchair bound’ I am a wheelchair user. It gives me freedom and life. It gives me the ability to participate and enjoy most things I want to. Only society is to blame for any barriers I face as a wheelchair user. I’m still anxiously awaiting my new chair that will hopefully fit me like a fancy glove, and I will write more then, but for now, here is a photo of me about a month ago, my first time on a gravel 'trail’.

{please don’t remove my words}

Isn’t man an amazing animal?
He kills wildlife - birds, kangaroos, deer,
all kinds of cats, coyotes, beavers,
groundhogs, mice, foxes and dingoes -
by the million in order to protect his domestic
animals and their feed. Then he kills domestic
animals by the billion and eats them. This in
turn kills man by the millions, because eating
all those animals leads to degenerative
- and fatal - health conditions like heart disease,
kidney disease, and cancer. So then man
tortures and kills millions more animals to
look for cures for these diseases. Elsewhere,
millions of other human beings are being
killed by hunger and malnutrition because
food they could eat is being used to fatten
domestic animals. Meanwhile, some people are
dying of sad laughter at the absurdity of man,
who kills so easily and so violently, and once a
year, sends out cards praying for Peace on Earth.
—  David Coates

My aunt needs spinal surgery, please help her, signal boost and donate (if you can)

“I never thought I’d have to make one of these pages, or at least I hoped I’d never have to (who ever does?). But, as many of you know, I have been living in China, teaching at an International School. I’ve struggled with chronic back issues for 4 years now, which is most likely caused by a degenerative condition called spondylosis. With this condition there is a narrowing of the vertebrate, causing discs to protrude and narrow the spinal canal, which has caused chronic pain in my muscles and nerves over the years, including multiple bulging discs throughout my cervical and thoracic spine. This can be caused by many things, especially sports as a young child. I’ve taken 2 X-Rays, 3 MRI’s , and one CT scan of my spine, tried multiple prescription pain medications, but nothing has given me quite enough relief. I’ve spent more money than I can say trying to control and overcome this condition, but so far, not much has helped to control the issue. I’ve tried acupuncture, with no luck, and recently I’ve been going to a physical therapist and chiropractor every weekend from Hangzhou to Shanghai and back to Hangzhou to teach on the week days.  I try my best to focus on helping children grow and learn, which has been my greatest achievement and enjoyment thus far in life, despite my back issues. “


Appreciating the Small Joys with @lovewalkeatsee

For more photos through Lara’s eyes, follow @lovewalkeatsee on Instagram.

“When I look at a landscape, I don’t see a landscape. I see a snippet within it,” says Australia native Lara Miller (@lovewalkeatsee). Lara has a degenerative eye condition that causes tunnel vision, which means she sees the world through a tight circle. But through her unique view, she notices things others might miss. Lara and her husband, David (@chiefmillso), are currently traveling through Europe and Southeast Asia. When the couple watches a sun rise, they look in different directions and later share their alternate viewpoints. “I turn my back and look at the colors playing across the building and the sky and the long shadows — the golden glow off everything,” she says.

Lara describes her photography as emotionally-motivated: “If it makes me feel something — whether it’s awe of the land, vitality from fresh food, inspired by small producers, the optimism of urban greenery or all gooey with cuddly animals — then I will post.”

Lara says it is unknown if and when she will lose her vision entirely. “In many ways, I kind of feel like the awareness of a precious thing deteriorating, my vision, has actually made me far more aware of little details, appreciating the small joys every day,” she says. “I mean, my husband will ring me up on the way home from work and say, ‘Look outside the window at the moon, it’s rising.’”


Facing Fears with Dark Art Artist @standarkart

To discover more dark art, and experience the world through Stanislav’s eyes, follow @standarkart on Instagram.

Born with cerebral palsy and suffering from a degenerative eye condition, Ukrainian Stanislav Krawczyk (@standarkart) remembers his childhood as a constant battle. Confined and isolated by hospital walls, Stanislav developed the urge to express himself, and by the age of 13, he knew he wanted to become an artist. In art, particularly dark art, he found a way to echo his emotions and channel his inner chaos and pain.

“Dark art for me is a more radical form of surreal,” he says. “If surreal is the combination of dream and reality, dark art is the combination of reality and nightmares.” One year ago, Stanislav left his home country and joined likeminded artists in Los Angeles in order to start a new, self-determined life. “I was just a blind disabled in the Ukraine,” he says. “Here I am part of the dark art society and cultural life of the city. And the main thing is, I can make a living. I have friends, a lot of friends, and I’m not alone.”

taylorswift Please help my best friend to SEE you at your concert in Louisville tonight! The beautiful girl on the left is my best friend, & she has a degenerative condition that has left her legally blind & will eventually take all of her vision. Loft 89 could be her one chance to get close enough to see you for herself instead of just hearing you. We’re just grateful that we could get tickets, but they sold out so fast that we couldn’t get handicapped tickets. We’re in the second balcony, Section 310, Row E, Seats 1 & 2. It would mean the world to her if you were one of the people that she was still able to see! Thank you for being such a great role model! Even if Loft 89 doesn’t happen, we’ll still be there supporting you & loving every minute of it!
loft89experience the1989meetups taylornationonline

So, @lbardugo just explained on her Instagram about her degenerative bone condition (osteonecrosis) and I can’t explain what this has done. Anyone who follows my blog probably knows I suffer from Chronic Lyme Disease, which is debilitating and painful and causes a myriad of issues and co-infections. People who know me know that my dream is to become a published author. I am *so* close to sending out queries to agents, but there’s been one hitch in my dream; I have chronic Lyme disease.
I’ve honestly been terrified that I would never be able to live this dream or get anywhere because what publisher or agent will want an author that can’t get her own food some days?

So, if you see this @lbardugo, thank you so much for being brave and sharing your story. I’m crying right now, because I think it might actually be possible to achieve my dream, and that’s thanks to you. <3

Ethan’s Awful Life

I can’t stop thinking what a terrible time it’s been for Ethan the last few months. I mean jesus.

His brother steals from him.

His brother finds out he’s a dad so Ethan has a baby thrust upon him and his flat and his life.

The baby isn’t Cal’s and she is taken away from them.

He loses confidence in his work after Olivia and Jess.

He tries to deal with it and then a patient kills himself and he feels responsible.

He resigns from his job.

Changes his mind and realises he should stick it out.

Finds out his mother isn’t his real mother and his birth mother has a genetic degenerative life shortening condition.

Finds out his brother lied about it to him for months.

Finds out she’s dying imminently.

His mother dies and he finds out he has been tested for the disease behind his back and subsequently has the gene.

Bloody hell. Poor guys it’s surprising and a testament to his character that he hasn’t had a breakdown yet. Seriously. Talk about a series of unfortunate events.

And cal has the audacity to say Ethan lives in an ‘antiseptic Ethan bubble’ where he 'loves to control everything’ well can you blame the poor guy? His life is always trying to break him no wonder he tries as hard as he can to control that.
Isn’t man an amazing animal? He kills wildlife - birds, kangaroos, deer, all kinds of cats, coyotes, beavers, groundhogs, mice, foxes and dingoes - by the million in order to protect his domestic animals and their feed. Then he kills domestic animals by the billion and eats them. This in turn kills man by the million, because eating all those animals leads to degenerative - and fatal- health conditions like heart disease, kidney disease, and cancer. So then man tortures and kills millions more animals to look for cures for these diseases. Elsewhere, millions of other human beings are being killed by hunger and malnutrition because food they could eat is being used to fatten domestic animals. Meanwhile, some people are dying of sad laughter at the absurdity of man, who kills so easily and so violently, and once a year, sends out cards praying for Peace on Earth.
—  C. David Coats

The Hall of Fame Speech Junior Seau’s Daughter Couldn’t Give

In his 20-year N.F.L. career, Junior Seau established himself as one of the game’s greatest linebackers. He committed suicide in 2012 at age 43 and was subsequently found to have had a degenerative brain condition linked to repeated hits to the head. Before his death, Seau told his daughter Sydney, 21, that she should speak on his behalf if he made it into the Pro Football Hall of Fame. But the Hall, citing a five-year-old policy of not letting others give full speeches for deceased inductees, did not allow Sydney to deliver her speech.

Recorded in her hotel room in Canton, Ohio, this is the speech Sydney had hoped to deliver on Saturday at the Pro Football Hall of Fame induction ceremony.

• • •

First off, I would like to thank the generous people of Canton, Ohio, for opening up their homes for this event, the Pro Football Hall of Fame committee for voting my father into the Hall, and of course the other seven deserving inductees.

Before I start thanking communities, teams, family and friends that I do know and many others that I have yet to have the pleasure of getting to know, I would like to say that this is not my speech to give. This speech was meant for a man that worked 20 years within the sport he loved most in this world.

I cannot speak for him because I am not him. I have not played in the N.F.L. for one second, let alone 20 years; I do not have past seasons to reminisce about or hilarious locker room stories to joke about. But I do have one thing, and that is unconditional love.

Your Junior Seau, your No. 55 and your buddy, was also my father. And although I didn’t know every aspect of his life, I did know one particular part very well. His athleticism and talent made him extraordinary enough to make it into the Hall, but it is his passion and heart that make him truly legendary and deserving of this tremendous honor. Tonight I would like to honor him and his legendary heart.

The two words that exemplify my dad the most are “passion” and “love.” Everything he achieved, accomplished or set his mind to was done with both qualities. In every situation — whether it be practice, a game, a family barbecue, an impromptu ukulele song or just a run on the Oceanside Strand — he always gave you all of himself because to him, there was never any other option.

I would like to think that his selflessness and ability to love unconditionally were instilled in him by his family. Nana, Papa, all my aunts, uncles, cousins, mother and brothers who share the Seau name, I know that he would say that this honor is also yours. You all were the motivation he needed to become a success. He wanted nothing more than to make you all proud, and I hope you know that without you he wouldn’t have been the man, the player or the father he was, and for that, I also thank you.

Being the first Polynesian and Samoan to make it into the Hall of Fame is such an accomplishment. He is proof that even a young boy from Oceanside can make his dreams a reality. All his success is a direct reflection of the Oceanside community and family that raised him and molded him into the man he became. Although he is the first Polynesian to make it into the Hall, I know he will not be the last.

San Diego, you are and always will be home. You have embraced my father with open arms and allowed him to carry on his athletic career, but more importantly the Junior Seau Foundation. In my mind, one of his greatest achievements was being able to give back to the community and home that gave him everything.

Looking back, it’s unbelievable because my father was an Oceanside Pirate, a U.S.C. Trojan, a Miami Dolphin, a New England Patriot, a San Diego Charger, and now he is, and forever will be, a Pro Football Hall of Famer. I think it’s safe to say that he has most definitely made it.

Even though he would never admit to retiring, I think this is the perfect final graduation. I say final graduation because in 2006, instead of retirement, my dad decided to graduate from being a Charger after 13 years. Today is the day he graduates from the game itself.

I think the point is, he could never fully retire from this game because that would indicate that he was quitting and you can’t quit something that is a part of who you are. Instead he graduates, and this is the diploma he has always dreamed of.

What keeps coming to mind when I think of him is the fact that he was basically superhuman. On the field he was relentless, hard-hitting, passionate and unstoppable. Off the field he was caring, gentle, hilarious and generous. On top of that he played within the league for 20 years, and that in itself is pretty exceptional.

But I think what we tend to forget about our favorite invincible, unstoppable, indestructible superhumans is the minor detail that they are also human. That is something that we all must endure today without his physical presence. We cannot celebrate his life and achievement without feeling the constant piece that’s missing.

May 2, 2012, we all endured a loss. Thousands lost their all-time favorite linebacker, hundreds lost their favorite Charger, tens lost their buddy, and four lost their father. The reason why this honor is so hard to accept is because we had always envisioned him still being here to accept it.

But something that we all cannot deny is that we are all still here. We can keep working today, we can keep building our tomorrows, and we can keep praying for the rest. This superhumanlike man truly blessed us with one of the most precious gifts he could have given. He gave us his time. With that time, I know he made one hell of an imprint on my life, and from the amount of emotion and love in this room, I think we all could say the same.

Something that is hard for me to admit to myself and to you all is the fact that I miss his singing. I miss his huge mangled hands strumming on his uke, playing the only five chords he knew, to the hundreds of songs he would attempt to sing off-key. I miss him calling me Beau, my girlie middle name, and I miss him hugging me too long and too tightly, almost to the point where I couldn’t breathe.

Yes, I witnessed his career and accomplishments as a pro athlete, but what I remember most is the way he made me feel. I can honestly say that he made me feel like I was the most important person in the world. The reason why I think he wanted me to present him is because I didn’t know his athletic career but I did know his heart, and I’m blessed to say that I felt his love for 18 beautiful years, and I still feel it to this day.

Dad, you gave us your time, your presence, your love, but most of all you gave us your heart. For that we honor you with this induction and this final graduation. I know at times it seemed as if everything you accomplished in life wasn’t enough, but today and every day since you held me in your arms for the first time, you weren’t just enough; you were more than enough. In fact, you were everything.

There’s nothing I want more than to see you walk up on stage, give me a hug and tell me that you love me one last time, but that isn’t our reality. You would always say you loved me, and even after I would respond and say I loved you, too, you would look me in the eyes and say, “I love you; do you hear me?”

Well, after this speech, I hope you can hear us when we say that we love you, and I hope that this induction can exemplify the fact that you were more than just Junior Seau — you were a light, and you’re still mine. This is your speech, your moment and your honor, and to say that I’m the most proud daughter on Earth would be an understatement. Congratulations, Dad; you made it.