However, there comes a time when speaking up for what you strongly believe in must trump your desire to keep the peace. Today I find myself in a position where I feel it my responsibility to step up on my soap box to deliver a message. I know this will probably raise the ire of several of my friends and family members, but to keep my mouth shut when something is as important as this is to me would be to deny, not only myself, but others in my position.
Earlier today one of my friends posted a link to a blog post written by a Brit-turned-American, who was born with a congenital heart condition, about her experience with the universal healthcare system in the United Kingdom and with our American system of healthcare (read it - My Heart - Your Vote). The article really hit home with me, because the ability to receive healthcare has become crucial in my world.
As this woman wrote:
"One day when discussing the Affordable Healthcare Bill a friend said: 'Yeah, it’s great but I don’t want to pay for it because I’m never gonna use it.' Now, there are two reactions I have to that – the first is: how the hell do you know you’ll never use it? The second is: (as it has been pointed out many times), you already do pay for it because uninsured people often need to use expensive emergency care because they do not have access to preventative medicine. Therefore costs go up. Rather what concerns me is that this seems like a very common attitude...: that they will never need healthcare and should not pay into it. Or if they are the lucky few who remain healthy until they die peacefully in their sleep at the age of 90 (which is unlikely) they see no ethical reason to help people who suffer."
Trust me when I tell you: At some point in time, it will matter to you. Either yourself, your spouse, your children, or your parents will be struck down with a disease that will not only be astronomical in cost, but will render that person unable to work (at least for a time) and at jeopardy of losing the thing they need the very most at that point: healthcare.
Three years ago I thought I was at the peak of health. I was in my early 30s, ran 50+ miles a week and had just qualified for the Boston Marathon. What I didn't know at the time was that within the next 6 months my life would be turned upside down. I would be diagnosed with Multiple Sclerosis, a disease where the immune system begins attacking the brain and spinal cord, causing a multitude of symptoms and a range of disabilities. It is not terminal in the vast majority of cases, but it is incurable. So, while I may not die from this disease, I will, no doubt, die with this disease.
Everyone knows the cost of healthcare in the US is astounding. But until you have a disease that requires non-generic medications, multiple expensive tests, hospital treatments, etc. and you know it will be like this for the rest of your life, I don't know if you know the half of it. The disease-modifying drugs for MS generally cost between $3,000-$5,000 per month. For one drug. It costs more per year for MS patients to take one medication, to hopefully make it so we don't end up a paraplegic or legally blind or permanently catheterized, than the annual income of most American households. Then you can add on the cost of the thousands of dollars for MRIs, IV steroid treatments, and medication after medication to help combat the symptoms of the disease.
After my diagnosis the healthcare system, the cost of medications, tests, and treatments became a huge factor in our lives. My husband had been a contractor in the healthcare software field for years. Contractors are generally not compensated for health insurance, but luckily we had private insurance at the time of my diagnosis. However, we were unsure if, now that I'd been diagnosed, they would drop us from their insurance or raise our premium past the point of us being able to afford to pay it. We found ourselves in a position where steady health insurance became mandatory, so my husband took a "normal" job for another healthcare company, and took a massive pay cut... but at least we knew we had health insurance that could not drop us if they felt like it, so we felt it was worth it.
At the current time we have health insurance and it covers the majority of my healthcare costs, so I suppose we're lucky. However, in the back of my mind the "what ifs" are always lingering. What if something were to happen to my husband's job and we lost our health insurance? Despite the fact that we have a very happy marriage, what if something happened and we got divorced? Or God forbid, what if something were to happen to my husband?
I know people probably look at me and think that I'm doing great, and that, if I am still out there running four days a week, that if I can still run a marathon, I'm okay.* She could hold a job that would give her health insurance, no problem. Think again.
This past spring I toyed with the idea of going back to school to get a doctorate in physical therapy, but just as I was trying to gather up my transcripts I was hit with another relapse of MS. I suffered from extreme dizziness and vertigo - I crashed into walls wherever I walked, I tipped over whenever I closed my eyes. Embarrassingly enough, I even fell off a toilet. I stopped driving because I knew I couldn't pass a field sobriety test - despite being fully sober. I started to literally run my errands when I was "only" dizzy, because, while I knew I might be weaving all over the sidewalk, at least I wasn't endangering anyone besides myself (and the road signs that I would occasionally crash into). Some hours or days the vertigo was so bad that I couldn't even see straight - the room would spin around me. I couldn't walk, I couldn't type, I couldn't even stand to read. All the spinning made me nauseous - like a never-ending bout of seasickness. It went on like this, day after day, for months. And this isn't the first time something like this has happened. I have been struck down by vertigo many times over the past few years, but also by crippling fatigue, or by excruciating stabbing-electrical pains in my ear due to my trigeminal neuralgia (which goes hand-in-hand with my MS) - and then there's just the annoyingness of not being able to feel any given part of my body on any given day. While the vertigo is mostly gone, I still suffer bouts of it, and find myself unable to drive at least one night a week.
My thoughts of going back to school were stopped in their tracks with this relapse because I knew that I would never make it through 5 years of schooling without having another relapse that would take me out for months and derail me from the timeline required by the school. And since I don't currently have a full-time job, finding a job would be a huge challenge. How could I find a job that would be okay with me missing at least one day a week due to the fact that I couldn't drive to work, or even see straight enough to do my work from home? What full-time job with health insurance would hire me, or keep me aboard, when I might not be able to come to work for months at a time if I were to relapse? For now, I do some freelance work in graphic design - it is flexible enough to allow me to work when I feel good and take off when I don't, but this type of work would never be able to provide health insurance or cover the costs of the healthcare that is essential to my life now. And no private health insurance will take me with a pre-existing condition, especially one that will last a lifetime, like MS.
What would my life be like without health insurance? I really don't want to find out. I know I wouldn't be able to afford my disease-modifying treatment, which would mean the chances of my MS progressing at a rapid rate would greatly increase, and which would, in turn, mean that I may become a burden to my own children. I probably wouldn't be able to afford the MRIs or steroid treatments for my disease. If my husband weren't in the picture I'd likely be forced to move myself and my children to live with family because I wouldn't be able to afford to pay for food, housing and the cost of even the most basic of my treatments. This is not a picture I want to see come to pass.
I'm not trying to make anyone feel sorry for me. Far from it. I try not to even feel sorry for myself. This disease is horrible, no doubt about it, and I wouldn't wish it on anyone, but that's not my point. What I do want everyone out there to realize is that this could happen to you. It will happen to someone you love. It might not be MS. It might be cancer like my grandmother is valiantly fighting, or that claimed my grandfather and my husband's sister. It might be Parkinson's, or Diabetes, or Cystic Fibrosis or Lou Gehrig's or a heart condition or any number of diseases and conditions. But someone you love, or possibly even you yourself, will be in the position of facing a disease that will be costly and will take away that person's ability to work. And when you take away the ability to work you also take away the ability to get health insurance. And, before you say it, Medicaid is much harder to be approved for than people think - as any number of people on the MS boards I've visited can tell you. In fact, my husband's income would put us outside the income range for Medicaid. But even with his decent income we couldn't afford to pay $60,000+ a year for my healthcare costs. There would be no ability for us to retire, for us to have the opportunity to send our children to college. Not through any fault of our own, but simply because I was unlucky enough develop a life-long disease.
How many people in a nation as advanced as the United States should have to put off going to the doctor because they don't have the money to pay for it, only to make their problems so much worse in the end? How many cases of cancer could have been caught earlier if that person hadn't put off visiting a doctor? How many more lives could have been saved? How can you deny healthcare to the people who need it the very most - those who have a pre-existing condition? And what will you tell the person you love when they are faced with this scenario?
*I make a conscious effort to keep up my fitness and my running - often times running when I'm dizzy or can't fully feel my feet or my legs. Part of me does this because I don't want MS to take away that part of my identity, but another part of me does it because my doctors have continuously told me that remaining healthy and fit will be beneficial to my prognosis in the long run. And some studies have even shown that the endorphins created from exercise and the Vitamin D soaked up while outside can assist in slowing down the progression of MS.
