I’m a quadriplegic American refugee

This is my story:

The promise of stem cell therapy

A dear friend of mine adopted a paraplegic kitten that some soulless, pathetic excuse of a human had harmed and discarded as garbage.

The poor cat had been literally living off garbage until a kind human saw him and brought him home. My friend then adopted him and the kitty’s long process of recovery began. His liver was in bad shape, his kidneys were failing and he suffered from severe colic. The vet said that his paralysis was the least of his problems at that point.

Fast forward two months: he’s in great health, playful and adorable. His vet referred my friend to a specialist who could set him up with a series of treatments for his paralyzed legs. After reviewing his x-rays and his entire medical history, the vet told my friend “I recommend stem cell therapy, hydrotherapy and physical therapy”.
My friend literally screamed and jumped for joy when she heard the words STEM CELL THERAPY. She had no idea that such a thing was even a possibility! Having known me for so long, she was very familiar with stem cell therapy and its potential uses.

As I’m sure you can all imagine, I’ve spent countless hours doing research for a cure for paralysis ever since my accident. There is none. However, stem cell therapy has been PROVEN to increase mobility in a surprisingly high percentage of spinal cord patients. I have to be brutally honest here, when I see fellow spinal cord injury sufferers talk about the possibility of walking again after undergoing stem cell therapy, I get sad because I don’t think that’s realistic at all. I certainly wouldn’t expect to walk again, but I know for a fact that stem cell therapy offers the very real possibility of increased mobility and that would make a world of difference for someone like me!

Able-bodied people would probably think “what would make you think that increased mobility would make such a big difference in your life?” I’m happy to explain.

I’ve met other quads who had more mobility than me and as a result didn’t need 24/7 care. For example a C5 quad woman I met in NYC was able to shower by herself (with supervision, of course) and she was also able to do things such as hold her phone (clumsily but still able) and sign her own checks. She could also feed herself with very little assistance. We had the exact same diagnosis: C5 quadriplegia, but she only needed part-time assistance due to the fact that she had more mobility in her arms, whereas I need assistance 24/7 because I can’t even scratch an itch on my forehead.

So yeah, increased mobility would definitely make me less of a burden to those around me.

I’ll be following this little guy’s progress with extreme interest!

Why am I crying?

#StemCellTherapy #SpinalCordInjuries #WheelchairLife #AMileInMyWheels82E14FAF-CC38-46FC-BD6D-347EB3C6926832C0DAF5-85FE-486F-8646-DEFDDB143F43

Why is greed so prevalent?

An experience I recently had with the only wheelchair accessible cab service in town prompted me to write this.

Greed motivates way too many people, not only in the United States of Corporations, but sadly all over the world.

I live in a city with very limited wheelchair accessible public transportation and have no choice but to call an expensive cab company that has wheelchair accessible vans whenever I need a ride. They are actually quite new. They only started operating last year. I spoke with the owner a few weeks ago and she explained that her family owns several large businesses, including a few cab companies, and when they saw a need for wheelchair accessible transportation, they jumped on it. They are wealthy, that’s obvious.

It became painfully clear to me that the only thing that motivates these people is greed when one time I dared to bring two suitcases with me (we were moving that day and I thought I’d help by carrying at least a couple of pieces of luggage). When the cab driver called the main office and mentioned that I had “extra luggage”, they sounded annoyed and charged me an extra fee. Why? It’s not like I asked them to help me carry anything, my caregiver was with me and she carried the suitcases. Also, those are not shared rides, so it’s not like I was taking up someone else’s space or anything. I don’t understand why they’d charge extra money especially considering the fact that I’m a loyal customer. Well, I have no choice since, sadly, they have no competition! But still, to take advantage of the fact that there is no competition is, in my humble opinion, despicable.

On another occasion they charged me an outrageously high extra fee for “having to wait”. Wow.

I know that attacking capitalism and capitalist-minded individuals makes me sound crazy to some people but honestly, at this point in my life I’m all out of fucks to give. Greed is disgusting. Period.

No, I’m not saying that everything should be free and that people shouldn’t charge for goods or services, I’m not insane. What I am saying is, why let greed be the main motivating factor when running a business? For example, the people that own the cab company I mentioned above could easily lower their rates and still make a killing. Yet they not only charge high fees (to a segment of the population that’s not exactly rich), they also find excuses to charge extra fees. Unacceptable.

I’d LOVE to get a wheelchair accessible van and become their competition! This is how I would operate:
– Can you afford to pay full fare? Please do so.
– You can only afford to pay half the regular fare? That’s fine.
– You can’t afford to pay? That’s OK. We’ll help you anyway and compensate for the expense by selling merchandise and holding fundraisers with local businesses.

You may say I’m a dreamer, but there’s an army of us. We just need to organize ourselves as well as the greedy crowd.

Would anyone wish they made more money on their deathbed?

#AMileInMyWheels #PeopleBeforeProfits #GreedWillDoomUsAll #CompassionIsPriceless

Callous ignorance

I’d like to address a callous comment that was posted on my op-ed article detailing my struggles as a disabled person who had to flee her country, the United States, to save her own life.

It takes a great deal of cowardice to anonymously attack a severely disabled person publicly discussing her life struggles in hopes of raising awareness about the cruelty with which a large part of the disabled population is treated in the United States.

I stood up to bullies before the accident that left me paralyzed and will continue to do so from this wheelchair.

But the main reason for this letter is to address that person’s main complaints: first, his suggestion that I was to blame for my accident and second, that I have no right to demand anything as far as disability benefits is concerned since I most likely already received all of the contributions I made before becoming paralyzed.

Forget about the callousness – the ignorance of facts it takes to make such a statement is astounding.

He asked how I was injured. Was it while partying? He seemed to feel that I somehow DESERVED to break my neck and become paralyzed, if it indeed happened while partying. No, it didn’t. It was during a swimming pool accident. I know he probably thinks I should have been home and not running any risks, but damn me! I just had to go out and hang out with friends and, gasp, swim!

I was also left with no choice but to explain to this person how public safety nets work. It amazes me that I STILL have to explain something this basic to adults like that hateful man. Social Security is a safety net we all contribute to through our paychecks. Some contribute for decades and don’t live long enough to collect. Other people, like me, contribute for a short period of time and start collecting at a relatively young age. And then there is the overwhelming majority who contribute their whole working lives and receive benefits once they retire. That’s how the system works: we all pay in and money is there for those who need it. It all balances itself out. It’s a way for civilized societies to prevent people from sinking into poverty due to a severe injury. Capiche?

I sometimes wonder if people like that feel as if they have have divine insurance against catastrophic accidents so that they can continue to freely judge people they’re never met, for facing unforeseen circumstances that could happen to anyone.

I guess the reason I allow people like that to affect me negatively is because they are a reminder that brainwashing against the poor has been very successful in what I refer to as the United States of Corporations. There has been a concerted effort by corporate manipulators to criminalize poverty since the Ronald Reagan era. His callous comment didn’t make me sad because I felt personally attacked. No, I actually cried because it made me realize that people who make billions successfully convince people who make thousands that those who haven’t climbed the ‘corporate ladder’ – their idea of success – (the poor, the elderly, the disabled) are the enemy.

Corporate greed is the enemy.

#AMileInMyWheels #WheelchairLife #PeopleBeforeProfits #CorporateGreed #JudgeLessLoveMore

A Mile In My Wheels

My name is Shannon Nelson. I am an American Refugee. This is my story.

Maine Voices: This party girl learned of disabled people’s struggle – the hard way

#AMileInMyWheels #AmericanRefugee #WheelchairLife #Corporatocracy #TwistedPriorities

American Refugee

I had to leave the United States to save my life. No hyperbole. I had to leave the only home I knew in order to save my life.

I decided that I couldn’t allow a cruel system now in the hands of a ruthlessly misogynistic, racist, ego and greed driven sociopath kill me. The callous policies and budget cuts enacted by previous GOP administrations (since the Reagan days) as well as the Trump administration have directly and negatively affected the disabled community of which I am part. I was at a point where I was facing homelessness and having to contemplate suicide as a way out. I actually researched it and found out that even that wasn’t an option because I’m supposed to be suffering from a terminal condition in order to qualify for assisted suicide in California. I guess quadriplegia doesn’t qualify as a ”terminal condition”.

Isn’t it disturbing that severely disabled Americans like myself can make peace with our disabilities but have to contemplate suicide as a way out of being unable to get the services needed to survive? We can’t afford to hire lobbyists, so I guess that makes us disposable. The greatness of a nation should be judged by how it treats its most vulnerable citizens – not by how much it helps its wealthiest.

Am I saying that all of our country’s problems started with Trump? Of course not. It’s the system that we have in place that puts profits ahead of people. All Trump did was put it on steroids and brag about it as if it were normal.

Anyway, I said fuck suicide and applied for a passport (and then a visa) instead. I am one of the lucky ones, not everyone can do what I did. It makes my heart ache to think that I left behind fellow disabled friends in dire situations. I wish I could have brought them all with me!

When I, a disabled American citizen who always played by the rules and contributed to the system until the day she broke her neck and became paralyzed, has to make the radical decision to leave her country in order to SAVE HER LIFE, you need to pause and re-think that “greatest country in the world” myth. I have lost count of the number of people I’ve met who are in similar situations and whose plan B is suicide.

Before I continue, I’d like to point out that I have documented proof of everything I’m stating here.

My mother left me some money upon her passing a few years ago which allowed me to move twice within the country looking for a better life for myself. I ended up giving up that pointless search because I realized that I was wasting my time moving from state to state. It’s the system. While some states treat their disabled populations better than others (thank you, New York!) others treat them as a complete burden (I’m looking at you, Arizona). But across the board, we seem to be the easiest target for budget cuts.

The financial resources my mother left me which allowed me to travel and explore options for a more dignified life, have now dwindled to nothing because I’ve been paying for attendant care out of pocket as well as outrageously high rent while waiting to be approved for around-the-clock care and subsidized housing. After months of waiting, I was only approved for up to 68 hours of care a week. Highly inadequate for my needs considering the fact that I cannot do absolutely anything for myself and need assistance throughout the day and night. The wait lists for subsidized housing are SO long (years!), I became convinced that I was going to die while waiting.

I was facing either homelessness or a slow painful death in a nursing home. I spent time in three of those houses or horror. I nearly got killed in the first (in Maine), which is why I escaped; and only survived the other two (in New York) thanks to my amazing friend Rose Mary who made sure she showed up every single day to take care of me. The monstrous things we witnessed inside those places left us forever scarred. Nursing homes are neither equipped nor staffed to properly care for severely disabled individuals like myself. I happen to know this from personal experience.

My fellow quad friend Chip died in a nursing home due to a pressure sore (extreme neglect). He used to drink daily to numb his physical and emotional pain. He was only in his mid 40s when he passed. I am 47. Dying slowly and painfully from extreme neglect is NOT how I envision myself checking out after everything I’ve been through (abuse, surgeries, bone infections, etc). Yeah, fuck that.

Budget cuts that take away food and care for the poor, elderly and disabled; tax cuts for people with yachts; cages for immigrant children; the relentless and despicable demonization of immigrants (led by a descendant of immigrants himself!); the normalization of hate; putting profits ahead of the well-being of the only planet we have; the vicious attack on women’s rights, promoting sexual predators to positions of power and authority, Etc. Is this really who we are?

Not happy with screwing us over by slashing funds for programs that our most vulnerable citizens depend on for survival, the heartless sociopath in the white house and his minions went after the ADA! (Americans With Disabilities Act). I never thought I’d witness that degree of evil! I’ve been denied access to a bathroom by a Walgreens employee AS A PAYING CUSTOMER for the first time in the 23 years of being disabled after Trump’s minions eviscerated the ADA. Large businesses, run by obscenely wealthy executives who prey on their fellow citizens, now know that they can get away with it. The psycho is on their side. They even went after “Meals on Wheels”!! Is this really who we are becoming? Are we really going to normalize this? Please don’t! Please get involved and resist. Apathy will be our downfall.

Needless to say, I will continue to #RESIST from far away.

#AMileInMyWheels #AmericanRefugee #Resist #ThisIsNotWhoWeAre #NoOneIsIllegalOnStolenLand #BalancingBudgetsOntheBacksOfThePoorAndDisabledIsImmoral #AsylumSeekersAreNotCriminals #USForeignPoliciesCreatedALotOfRefugees #CagingChildrenIsFuckedUp #ThereIsNoPlanetB #TheWholeWorldIsWatching #ResistResistResist #CompassionIsNotWeakness #WillYouWishYouHatedMoreOnYourDeathBed #LetThatSinkInIMG_4740.JPG

Values?

“Where are all the grandparents?” My recently arrived Latin American friend asked.
“We put them in nursing homes” I replied, as if it was normal.
“That’s fucked up!” She said.
“She’s silly and  judgmental”, I thought to myself.
“You wouldn’t be here if it wasn’t for them. You’re supposed to take care of them when they can no longer take care of themselves!” She added.
“Well, I guess we have different values up here” I replied.
“Values? You call those “values”? I guess we have a different view of the meaning of that word.” she added. Then shook her head and walked away.

Years later I learned how very right she was and how messed up our culture and “values” really are.

Is it really worth spending an entire life trying to climb the corporate ladder? And what if you actually arrive? I have yet to meet a truly happy, joyful and peaceful Wall Street broker. I lived in New York City. There are plenty of those out there. What angry, pitiful and stressed out beings they are. I’d rather die a quick death than go through life just existing while desperately trying to “make it” at the cost of losing sight of what truly matters: those things that money can’t buy.

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FREE BEER!

Now that I got your attention, PLEASE make sure you VOTE! And bring at least 5 people with you! Democracy is a beautiful thing. Corporatocracy must go!

Also, please bear with me as I update my blog. I recently moved out of the United States, so I’m busy adjusting to my new life overseas.

Peace! ✌️

Resist. Rise Up.

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When Assisted Suicide Becomes a Viable Option

One of my most controversial opinions is related to the subject of euthanasia. I strongly believe that if all one has to look forward to is a life of pain with no hope of relief (for example: a person riddled with terminal cancer and suffering horrendous pain), one should have the RIGHT to put an end to that pain and suffering in a loving environment–surrounded by family and friends, rather than having no choice other than doing it in a desperately violent way (throwing oneself into incoming traffic, shooting oneself, etc).

HOWEVER, when people are forced to contemplate suicide as a way out of a hopeless situation in which they are given very few options; that’s completely unacceptable. A system that pushes people to those extremes, is a failed system that needs to be dismantled.

The only two things that keep some of us from running our wheelchairs into traffic are 1) the fear of NOT dying! And 2) the fear of injuring and/or potentially killing other people in the process.

The title of this short blog entry pretty much encompasses the spirit of my letter to governor Brown (see below). Any and all help spreading the word is greatly appreciated.

April 13, 2018

Governor Edmund G. Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

Dear Governor Brown:

My name is Shannon Nelson. I am a 47 year-old quadriplegic woman living in Emeryville.

I’ve been paralyzed from the chest down since 1995 due to a spinal cord injury caused by a swimming pool accident. I moved (actually escaped) from Maine to New York–after being abandoned in a nursing home by my family at 41 years of age–then from New York to California. I suffer from severe nerve pain and couldn’t handle another brutal New York winter.

I moved here not only because of the warmer weather but also because researching the best places to live as a disabled individual consistently showed California–specifically the Bay Area–as the best option.

After a year and a half of navigating the system, I’m exhausted, disheartened and feeling utterly hopeless. 

Rights on paper alone are useless.

Every single disabled resident of the Bay Area I’ve met so far (except those with ample financial resources), struggles a great deal due to the lack of state resources allocated to their care. Actually, to say that we struggle is a huge understatement. When you start considering assisted suicide as a perfectly viable option, you have to pause and question not your own sanity but that of the people in charge of making decisions that directly (and negatively) affect the most vulnerable.

I’m sure you receive hundreds, probably thousands, of letters from distraught marginalized Californians begging for their fair share of the pie; therefore, I’m not delusional enough to expect my little letter to educate you about our plight and make you change policies to help us.

The reason for this letter is simply to document our struggle and hopefully educate our fellow Americans about what we have to go through. If enough people join our cause, maybe, just maybe, we will get people in charge of writing legislation to listen. This is why I decided a good first step would be to contact those people.

Most disabled people I know, myself included, have made peace with our disabilities to varying degrees; however, when we struggle–for example–to find caregivers willing to work for the starvation wages that the state of California pays, we feel utterly helpless, more so than by the fact that we are not able-bodied.

In addition to struggling to find and keep reliable caregivers willing to work for such low wages, many of us also have to deal with the never-ending, ever worsening lack of affordable housing. As I’m sure you know, it has now reached a crisis level.

I am on a wait list to get all of the hours of care I need as well as for affordable housing; however these wait lists are unbelievably long (years!) I recently had a severe medical emergency that caused me to spend five days in the ICU at Alta Bates Medical Center–which led me to the realization that I might actually die while waiting.

When I read an article about you, sir, boasting about the state’s budget surplus, the first thought that came to my mind was “at whose expense?”

Years from now, when you’ve retired from public office and are asked to assess your time as governor, will you think about all of the Californians that were left behind?

The “greatest country in the world” does not treat its most vulnerable citizens with dignity. That, I believe, is a tragedy.

Sincerely,

Shannon Nelson

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