The main thing is to be moved, to love, to hope, to tremble, to live.” ~ Auguste Rodin

At the end of every year I put together a video compilation of some of the things I've seen or experienced; a snapshot of my year on wheels. Here is my 2019.

Without planning, I've been documenting my travels and experiences for years, perhaps, so they can provide a window into a life I used to live when the days of 'no longer' approach. While I like to share my travels with my followers, I do these annual videos more for myself, as if, subconsciously, I'm aware these transitory moments could be my last, and in this knowing I can relish it in digital form for as long as I want. 

Remember, this video is only a three-and-a-half minute snapshot out of a year. I know it may look like I’ve done so much, and it's hard imagining the struggle of someone who can do these things, but it isn’t the complete story. Most see pictures and think I’m physically fine, not realizing how progressed I am. But pictures and videos are inherently incomplete because you don't see the surrounding moments. Hence, social media.

You don't see the month it took to recover from travels or all the pain and mourning constant loss. You don’t see the amount of fatigue, pain and even tears it costs just to get on a plane. You don't see all the struggles and days in bed as my body dominates any will I have left. You don't see the periodic hopelessness and somber grueling spaces in time with seemingly no outstretched hand in sight.

I don’t like when “motivational speakers” pretend the only necessary element is choosing positivity. I don’t like the sometimes 'cherry on the top' approach when sharing what a life like this is like. In the rawness of an uncontrollable moment, even the most positive of people sway occasionally. There is undoubtedly many heartbreaking moments, soul-searching and much grieving can happen behind closed doors. It doesn’t mean I’m constantly depressed and woefully unhappy, but it’s not easy.

I never want to give the false illusion that it's always positive or positivity is enough to get us through because it isn't. Inherently, I’m a positive, humorous and a passionate person and this side I project is very much me and genuine. But there can also be some pretty dark moments, and when it's happening I have to do my best to find my way back.

Living out my curiosities offers me a road towards potential and freedom. When I travel or do art, I just want to be Kam. I don’t want to be Kam in a chair or disabled Kam. I’ve only ever wanted to be just myself — never strung to labels too deeply, for labels masquerade and dilute the nuance which is individuals.

If for these few moments I can delight in what I want to do, and what fuels my passion, then I’m glad to share that freedom with you. Freedom from all of it. Freedom from all the bullshit, worries and expectations. If for these few moments I can be the real me without this disease, then I’ll take it and savor it inside for the rest of my life, for it's these fleeting moments that carry me through. 

Without them, I’d be nothing. I'd be done.

You can watch my other annual travel compilations here.

It's 2020 and a month has already gone by, so I wont go into 2019 much. Here is what I wrote a month ago: 

My 2019 began with all those horrible debilitating chronic symptoms I've been sharing the past couple years. But I'm happy to report that since August much of the severity of these symptoms has greatly subsided. I haven't really mentioned it as I didn't want to “jinx” it, not that I place any real weight on superstitions.

I'm not sure what has caused this sudden departure but I'm grateful. For two years I've sought multiple specialists, much of it pointless since insurance wouldn’t cover basic prescriptions that would cost thousands a month, out of pocket. But I was never officially diagnosed, though they felt it was autoimmune related. Regardless, I hope this exit endures because I'm more functional and active.

I'm still dealing with all the side effects of having a muscle wasting disorder and discovering new residual affects all the time. My neck is now very progressed and very painful and I'm developing severe back pain. My fatigue is always worsening and I have to constantly fight myself just to stay in the game.

It never ends. 

What else? I officially started my children's book, did some traveling to Mexico city to celebrate 40 years of life and 20 years with this disease, and Peru for our 10 year anniversary. Jason and I also created Chair Devils.

The biggest change came in December when a really good company courted Jason for a management position. A year and a half ago Jason was laid off and we decided to give freelance a chance so he could work from home. We wanted to use a time of lower income to see if we could get approved for home care services but even at unemployment level, we couldn't.

But we still took advantage of the lay off to test out freelance as I’m getting more and more progressed. Jason and I are forced to constantly think of present and future logistics most people never have to even consider until their final years of life. When you can't move, every second of your day is affected. We thought Jason working from home may be more ideal, as a future of requiring (expensive) full-time care is rearing its ugly head.

What people don’t realize is what it costs to be disabled. Society thinks people with disabilities get all these “handouts' but they don't know how expensive it is to be disabled. We have more medical expenses, prescriptions, home care costs, and must custom fit everything from our homes to mobility aids to cars just to live a semi-normal life. It’s an expensive life, no matter how much you pull your boot straps up and it's also compiled by a society who does not hire people with disabilities. Even someone like me with two degrees and multiple design awards has experienced job discrimination, so I can't imagine what it’s like for those who don’t have access to education. And, it's even worse for those with no partners or supportive (rich) families. 

Anyone making an excellent upper middle-income and salary would still face financial challenges with the never-ending increase in medical and assistive expenses required to aid limitations, especially the more severe the disability, like mine. Yet, many people with disabilities, especially if single, live off of benefits and in lower income bracket due to limitations and/or society discriminating against us. Not everyone can create and live off a successful advocacy career, which is what many people with disabilities are forced to do to build an income.

Most people with disabilities don't want “handouts”. They would rather be able-bodied and accepted into society as valid and contributing members, yet we are often turned away. When we reduce a whole segment of people with disabilities or health issues as people looking for “handouts” we reduce our potential self for we all have the potential to become disabled or ill at no fault of our own. 

But this assumption is demoralizing because this is not me. I work hard. I've worked hard. Every single thing I have in my life, I worked for. I didn't have parents buying my cars, insurance and college. I did it. I've been working since I was 15 years old. I worked hard for scholarships. I got all A's. I put myself through two degrees. I paid for everything pretty much since I was 16 years old and sometimes worked 2-3 jobs. We're fortunate we’re able to be financially responsible, and we avoid debt like the plague. I did everything right. My boot straps have always been up. But situations like disability isn’t awarded to those who deserve it or didn't try hard enough. Life happens and what is happening to me can happen to anyone in this random life lottery.

Home care costs alone are expensive and it’s something we’re now strategizing which is why we tried out freelance for awhile. For example, 15 hours of care, 7 days a week @ $15 per hour is around $76,00 annually. If you need 24 hour care that can be over $100,000 a year, and even just 8 hours a day is over $40k. It’s expensive and many go without care, respite or ration hours due to the expenses.

And, home care isn’t even the beginning. We paid $8k out of pocket for my chair and it was only that little because I had to battle insurance for over a year. Wheelchairs can cost from $5,000 - $15,000 and up. An accessible van can range from $40k-$100k and it's thousands to make one's home accessible. How many able-bodied people have to build an expensive ramp just to get in their front door? If we would’ve had the money I would have gotten an accessible van years ago and made my home more accessible to fit the progressive stages. Both would have allowed me to keep function, like driving and cooking, much longer.

We are currently looking for a lift as it is getting harder to lift me. A lift is $10,000. I could go on and on with list of expensive expenses we face.

Just recently NPR came out with a story of Amtrak charging two disabled people attempting to buy a $16 train ticket from Chicago to Bloomington, Il. The quote? $25,000. Because they don't make transportation accessible, Amtrak would have to empty out an entire cab and to do so would cost $25,000.

This is what I'm talking about.

To be clear, I think home care workers should be paid more. Most of them are underpaid for important work. But at the same time a community that often lives in lower income, if they don’t have family or a partner, struggles even to pay the bare minimum. We are luckier than most and I’m fortunate to be able to work and create my own opportunities. But even we are constantly strategizing and budgeting for this uncertain future and yet there's no amount of preparing one can do.

So much goes into daily planning for us and I’m nervous about being home alone six days a week, twelve hours a day (Jason is also teaching at a University on Saturdays). The only thing I really need during the day, while Jason is at work, is assistance to go to the bathroom. This is my greatest achilles heel. Other than that, I’m mostly working at my desk working on freelance and personal projects and don’t require much.

Although, a year and a half of Jason being home means I’ve gotten weaker because I’m now used to his assistance. For example, I could open the fridge and my front door easier a year and a half ago, but today I no longer can open the fridge and opening the front door is painfully slow, laborious and challenging.

The required caretaker stage is a stage I’ve always dreaded and mostly avoided or made due until now. I'm nervous about bringing in a stranger and hate the feeling of needing a “babysitter” as an adult. I can’t explain how awful it is to live your every second of physical will through someone else. You get used to it, because we have to, but nothing compares to independence. But, ultimately we decided it would be best for Jason to go back to work. Freelance is difficult and unstable and we needed better health insurance.

This is the problem of relying on employer insurance, it’s not reliable; something they conveniently don’t speak about on the news and campaign trails. You can be laid off and employers are cutting health insurance all the time. If you get a divorce or your partner dies, and they were the primary income with health insurance, you’re suddenly without. Imagine this scenario as a windowed or single parent. Or if you’re like us, your industry mostly hires contracts so they don’t have to offer employer insurance. Add this to an overly expensive and bloated healthcare industry and it makes it hard for anyone who relies on healthcare.

Jason has been laid off some six times in ten years because of this. Jason has a great reputation and does amazing work, so it’s not him. It's the trend of companies digging and abusing the work force as they get rid of us as soon as a project ends and work to give as little as possible in a culture of annual layoffs, while CEOs continue giving themselves bigger salaries and golden parachutes. Company loyalty is no longer a thing...it hasn't been for a very long time. 

So, our main reason for Jason to go back to studio life is insurance. When he was laid off we had to sign up for ACA...and it's been terrible. It barely covers a thing and has absurdly high out-of-pocket expenses. For example, Jason went to the ER for kidney stones and the out of pocket bill was over $6,000 for a two hours visit. This was precisely why we were scared to go to the ER. And, this is because in 2008 the healthcare industry paid over $20 million to have a seat at the ACA table, which is why Washington didn’t enforce price caps and continued hospital tax breaks that provide billions of dollars in extra income, while costing communities hundreds of millions of dollars in local taxes, making ACA, once again, a gift to private insurance. ACA was formerly a republican “Mitt Romney” healthcare plan, born out of a republican think tank and also bought by private insurance with all these provisions and tax breaks.

Don’t get me wrong, ACA has helped people and better than what we had, like covering people with pre-existing conditions which before they didn’t. For example, I had a friend with cancer and her private insurance wouldn’t pay for her treatment until she reached stage 4, so ACA covered her. But ACA is not enough and still makes healthcare inaccessible for many with crazy premiums and out-of-pocket expenses, and it was since made worse after republicans made adjustments in efforts to undermine it. It’s also still a gift to the privatized healthcare industry with the largest insurers massively profiting from it…and they paid handsomely for this privilege.

Both sides talk about the need for change and corruption of the industry, yet it’s just that. Talk. Because In 2019, in a bipartisan vote, congress voted to give multi-billion tax breaks to big pharma, hospitals and insurance through lobbying dollars...again. And this doesn’t even begin to give a picture on how it all works as these industries and lobbyists give tens of millions equally to BOTH political parties in every election. In fact, in twenty years the pharmaceutical, insurance and health industry has given nearly 4 billion dollars to republican and democrat politicians, making it the most influential industry in Washington next to the military industrial complex (war).

And, now the current administration is proposing to cut off hundreds of thousands of people with disabilities from an estimated $2.6 billion in Social Security disability benefits over a decade, requiring people with disabilities to re-prove their disability and deal with the complex red-tape every two years.

Healthcare is one of our biggest concerns…the whole country is clear this is THE most important issue on the list. Even doctors and nurses are signing onto a growing list of demanding change. Why?

Because, privatized for-profit healthcare is corrupt and should not be able to own our lives. You don’t know what it’s truly like until it happens to you...Seriously. You don’t. Take it from someone who lives it everyday. You’re already going through a tremendous amount of physical, emotional and psychological stress, and fighting for your life and then, while you’re sick or disabled and barely able to move — you have to fight an insanely greed infested industry who tell you, if you don’t have a certain amount of money you die or continue to suffer. This kind of “access” can make people like me want to commit suicide.

So many of my doctors sympathize and agree it’s all corrupt, which frustrates them, too because they can’t do their job and treat their patients.

Diseases and disability are often NOT self-inflicted, it happens without invitation or fault. It could be you, your child, your parents and loved ones. Life can hit anyone of us and any of you could end up like me or sick and imprisoned by exorbitant prices.

These companies can still be fair and non-exploitative and still make an obscene amount of money, but it’s never enough for these people. They want it all, including your life.

What kind of society are we when we justify or defend this kind of sociopathic behavior?

I’m for capitalism and free market, but we don’t have that. What we have is cronyism and I don’t think aspects like healthcare and our lives should be left to morally bankrupt industries whose primary concern is the bottom line even if it means your life.

Americans can’t continue to allow this.

Some examples of what the nation is experiencing:

Back Surgery Saved Him From Paralysis. Then the Bills Arrived: Over $650,000

After Surgery, Surprise $117,000 Medical Bill From Doctor He Didn’t Know

A Year After Spinal Surgery. A $94,031 Bill Feels Like A Back Breaker

My art gallery

Follow my wheelchair travels, art and mini-memoirs at Instagram.com/kamredlawsk and Facebook.