Happy Independence Day

July 4th is fast approaching. And so we celebrate our independence from a ruthless, even heartless tyrant who once controlled our lives and defined what we could be. There was a generational dimension to the conflict. Young men and women called themselves Americans and fought to the death to be free. Yet many if not most of us do not know true independence because an enemy within is holding us hostage. Devastating illness.
According to the CDC, just about half of all adults, 117 million of us, live with one or more chronic conditions. One of four adults has two or more of these illnesses. These are the leading Causes of death and disability in the United States. Heart disease, stroke, cancer, diabetes, obesity, and arthritis are among the most common and costly of all chronic health problems.
And Friday, we celebrate our freedom?
I am not independent. I am doctored to death. I need others to assist me in life’s little tasks, to take me where I need to go or pick me up off the floor. We are not taking care of ourselves. The President is sending hundreds of advisors to Iraq, and then hundreds more in his variation on an old theme. Vietnamization. We never learn.
What we all must learn is that baby boomers are the bulge in the population. As we age, the number of chronic conditions we will face increases proportionally. We are letting ourselves down as we head into our so-called golden years.
So run Old Glory up the flagpole. Enjoy your picnic and set off your fire works. Nothing wrong with that. But bare in mind, you are not independent. You are heavily reliant on others and on a government capable of finding cures but unable to find the money to do it. Check out the projections for virtually every disease known to us. Get scared, and ask yourself who is going to answer the door when your bell rings in the dead of night.

39 Responses to Happy Independence Day

  1. Matt July 3, 2014 at 12:01 pm #

    We continuely shoot ourselves in the foot as a country! You can not win a holy war. We dump money into other countries to help the people and then turn our backs on our own people. Happy 4th to all, love each other and help each other.

    • Sarah Kane July 3, 2014 at 11:54 pm #

      Matt,

      Ditto to your comments. Richard is also right – we never learn. If we haven’t learned thus far, we never will. This is what happens when people don’t pay attention to history. We have so much potential to do the right things as a nation, but evil always seems to prevail. Yes, please help and care for one another, as was the custom in this country since it’s inception.

    • cohen July 4, 2014 at 8:53 am #

      Amen.

      R.

      • Vincent Spoto July 4, 2014 at 6:28 pm #

        Richard –

        You are spot on. Afflicted with MS myself, it amazes me that the United States can give hundreds of millions of dollars each year to countries like Pakistan, etc. who hate us, burn our flag, etc. but cannot find the money to invest in needed research to help combat and cure chronic diseases – like MS – which impact millions of Americans. I just don’t get it! Wake up America – WAKE UP!!!

    • Vincent Spoto July 11, 2014 at 5:19 pm #

      You are spot on. Afflicted with MS myself, it amazes me that the United States can give hundreds of millions of dollars each year to countries like Pakistan, who hates us, burns our flag, etc. but yet we cannot find the money to invest in needed research to help combat and cure chronic diseases – like MS – which impacts millions of Americans. I just don’t get it! Wake up America – WAKE UP!!!

  2. Linda Lazarus July 3, 2014 at 12:04 pm #

    I get it. The bell is tolling for me. BUT, I just crawled in wet soil for three hours picking sweet, organic peas. On my small farm life is respected, solutions are discovered, this planet is fascinating and we laugh out loud a lot.

    So, I have a physical and a mental oasis and crawling serves me well. I hear what you are saying but, for a minute, it is one sugar snap pea after the other. And I am grateful.

    • cohen July 3, 2014 at 12:36 pm #

      Go for it.
      R.

  3. Nancy Cincotta July 3, 2014 at 12:48 pm #

    Amen !

  4. Nik July 3, 2014 at 12:54 pm #

    Wow! Ha. With my one partially working eye I read and laugh, then return to sadness. Such truthful words you have.

    18 days housebound with first (attack?) of MS and this blog is my daily high. Pathetic? Oh well….my 12 year old will be home from camp soon. To a mom he doesn’t probably recognize at the moment. He will care for me like no kid his age should have to. But, because of this post we will have some good conversation about the 4th and independence.

    Thanks.

    • cohen July 3, 2014 at 4:34 pm #

      A privilege. Happy holiday.

      Best,
      R.

    • Sarah Kane July 3, 2014 at 10:45 pm #

      Nik,

      You and I are in the exact same predicament it seems. I also have a twelve year old who helps take care of me. He’s been helping take of me since he was eight. He’s used to it, but needs a break to be a kid. Hard to do though when mom is a single parent and has no real father figure except a quickly aging grandfather who loves him to pieces, but is too old and frail now to do fatherly things with him.
      I also love watching movies, crazy or otherwise. They take my mind off of me and all the junk I deal with, like all of you.
      It’s nice to know that someone else is in the same exact place as me with a young child, even though I’m sad you are.
      Misery loves company, eh? Take care.
      🙂

      • cohen July 4, 2014 at 8:56 am #

        My best to you.

        R.

      • Nik July 5, 2014 at 4:36 pm #

        Ah , yes Sarah. Tis actually comforting ! I wish you well. Our kids will benefit from this somehow.

        Nik

  5. Elizabeth July 3, 2014 at 2:54 pm #

    I spent the morning crying, feeling defeated, ironically begging the state of NY to forgive my taxes from the business I tried to run and failed because I was sick. There is no forgiveness, I try, I fall, I fail and no one cares. I keep my illness hidden because when I just disclosed to my last employer, my boss tortured me and made my illness worse and I haven’t recovered. Hopeless, helpless, not feeling freedom or independence, feeling guilt, shame, and chained.

    • Nik July 3, 2014 at 3:25 pm #

      Ah yes! work. Hadn’t gotten that far yet. As a Teaching Assistant I haven’t yet thought of what this might mean. Elizabeth , you are here and alive and I wish you Peace. I wish us all peace. Deep belly breathes getting me through each day. Get yourself to something that makes you happy even for just five minutes when you can. For some reason, crazy movies do it for me. I just watched Frances Ha with my one semi- working eye. It was quite entertaining.

    • cohen July 3, 2014 at 4:39 pm #

      Elizabeth-

      I am sorry. It is difficult to climb out of ruts. Keep trying. You have a life. Please keep trying to live it.

      R.

    • cohen July 3, 2014 at 4:40 pm #

      Elizabeth-

      You have to move off dead center. I am sorry. It is difficult to climb out of ruts. Keep trying. You have a life. Please keep trying to live it.

      R.

    • Sarah Kane July 3, 2014 at 11:12 pm #

      Elizabeth,

      If I win the lottery, I’ll need your address to send you however much you need to get back on your feet, and then some. I care about you, but my caring can’t pay the bills or the taxes. I’m very sorry. I care about all people who have to endure any dread disease like ours.

      I know first hand about bosses who don’t care and seem to live to make your life miserable. To hell with them…they’ll have their day in court.
      I would be able to hide my illness except my bad walking and breathlessness kinda give it away. Then people just think I’m a freak, so I don’t go many places.

      And you’re right. There is no forgiveness, especially in the workplace. And there are oodles and oodles of uncaring soulless people. It’s a different and cold world we live in today. I don’t recognize this country anymore, but never lose gratitude for those who gave us what little we hold on to today.
      I’m praying for you and all who go through these injustices everyday. In God we can trust in the end, but never the government.
      Please know that at least one person you don’t know cares about you.

    • cohen July 4, 2014 at 8:59 am #

      Pleasde sto;p feeling guilt and shame. You are dealing with circumstances beyond you control. Hold your head up.

      BEST,
      R.

  6. Linda Lazarus July 3, 2014 at 5:14 pm #

    Elizabeth and Nik,
    Have you found your way to the MS forums at MSWorld or at the Braintalk MS forum? Lots of people with centuries of experience (collectively) and MSers with a willingness to connect. And the archives give you real life experiences of people that may be useful.

  7. Sandy July 3, 2014 at 6:06 pm #

    Independence is very important to me. I like other people I really do. But I also like to do a lot of things alone. Read, shop for groceries and wine, go to the library, garden, lots of things by myself. So today the ignorance of the woman on the other end of the line really pissed me off…..of course I cant say anything to her because she works for the only place I can shop for a new walker according to my insurance company.

    I am trying hard to not admit how hard it is for me to make the transition from the cane to the walker. It came up on me rather quickly and I was not prepared for it. It seems like just recently I began with the cane. Not so. Its been a while but I try to not recall it. So today I finally decided on the rolling walker I wanted and called to order it. I was told that the shop at my Mayo clinic does not carry that one and I would have to buy a different one. I want THAT one because its light and folds easier and I will be able to get it in and out of the car MYSELF. If I get a heavy one or one that wont fit behind my seat in my minivan then I wont be able to do it MYSELF.

    I told her that I would have to always have someone with me in order to use any of the ones they have. Thats when SHE said, “Well you may have to just do that then.” I said “Excuse me? You mean you cant order me the one that would let me retain my independence?” She said, “We cant just order what ever people want.”

    I think my neurologist and her supervisor may have a talk next week. We need to explore in inner workings of the “patient-centered care” we like to hear so much about. So later on next week I will celebrate my independence day if I have to order that damn thing and pay for it myself. Which is really the goal of the insurance company anyway.

    • cohen July 4, 2014 at 9:04 am #

      There is something wrong here. There has to be ssomeone who can over rule Broomhilda. Be the squeaky wheel.

      R.

      • Sandy July 4, 2014 at 3:12 pm #

        Oh I think she and I will talk again with her supervisor too. My neuro will not appreciate the situation either. Squeak, squeak.

      • Sandy July 8, 2014 at 4:49 pm #

        After several phone calls and a fax from my neuro to the ladies in the medical equip dept. an order has finally been placed!!!

        Squeak, squeak.
        Sandy

  8. Yvonne July 3, 2014 at 8:13 pm #

    The government is part of the biggest cartel in the world-pharmaceutical companies. As all drug dealers know there is no money in the cure, only in the comeback. So chronic illness will remain chronic as long as it’s profitable. And the band played on.

    • Sarah Kane July 3, 2014 at 10:27 pm #

      Yvonne,

      You hit the nail on the head. There are at least twenty different medicines to control symptoms, but none that actually rebuild myelin. As long as there’s money to be made for any disease, there won’t ever be a cure for any of them.
      And yes, the band played on…..

    • cohen July 4, 2014 at 9:06 am #

      I hope you are wrong and there are docs out there working for a cure. The rest can go suck an egg.

      R.

      • Sarah Kane July 4, 2014 at 10:10 am #

        I hope I’m wrong too, Richard.

  9. Sarah Kane July 3, 2014 at 11:35 pm #

    All,

    Richard also hit the nail on the head. We are not independent anymore, individualistically or as a nation. Not too long ago, I believe we were an independent nation. Perhaps, because of all the injustices that the diseased and healthy both face, this holiday might be better named ‘Dependent Day’, since we all have to depend on someone or some entity, i.e. the government.
    What a horrible thought in the face of what so many sacrificed to make our country a comfortable place to live. Tis no more…..

    • cohen July 4, 2014 at 9:08 am #

      Tis true.

      R.

  10. MB July 4, 2014 at 12:05 am #

    I miss my independence. Sometimes I just want to jump in the car and drive to Walgreen’s to buy a Snickers bar. But instead I eat an apple and pretend that’s what I wanted all along.

    • cohen July 4, 2014 at 9:09 am #

      Healthier than a candy bar. But sometimes you just have to.

      R.

    • Sarah Kane July 4, 2014 at 9:29 am #

      MB,

      Boy does that sound familiar!

  11. Joan July 4, 2014 at 8:54 am #

    Years ago, during a very dark day, I ran across Airplane! while surfing the ‘free’ channels. I had seen it, but watched again anyway. Found myself laughing out loud, and the clouds parted for a little while. I can watch that movie over and over and it always helps brighten the day. So lesson learned, I keep a list. There are several, try My Cousin Vinny also. Or The Blues Brothers. Or you tell me. I watched City Island the other day for the second time, adding it to my list.

    The challenge for me is remembering techniques that lift my mood and taking a step in that direction. Disease and disability don’t budge, but a good thigh slapper makes the world a little brighter. Priceless even if only for a couple of hours.

    Happy 4th!

    • cohen July 4, 2014 at 9:10 am #

      Amen.’

      R.

    • Sarah Kane July 4, 2014 at 10:00 am #

      Joan,

      I watched My Cousin Vinny the other day. I hadn’t seen it in a long time, and it had me laughing again pretty much the whole time. I was glad I caught it from the beginning. The Blues Brothers is also a great classic.
      There are so many movies that can pick us up, but mostly they serve to take our minds away from ourselves for a couple of hours, like you said. We all need that.

      Happy 4th to everyone.

      .

  12. Christopher July 4, 2014 at 12:31 pm #

    Every time I foolishly ignore the fact that I am not so independent anymore, and especially when I push myself, I inevitably get hurt. Like today… I was trying to get into my bungalow from my car. I pushed myself even though my legs were too spastic from the medicine I took earlier, and I took a header into an iron bollard. I ended up in the ER with a large laceration on the back of my head, a really bad headache and badly bruised ego.

    The universe took me down a peg for my ignorance and arrogance. It also could very well have l taken much more.

    It’s really difficult, but I have to constantly keep reminding myself that I’m stuck in a veritable backcountry, and I shouldn’t go exploring without a guide–it’s too dangerous now.

    • cohen July 5, 2014 at 10:43 am #

      C-

      Pushing yourself is not necessarily ignorance or arrogance. Staying in the race is important on a multitude of levels. Refusing to concede has its merits. We all make dumb choices. Keep them to a minimum and live with them. Better than rtaking the easy way out. I hate casinos, but I am a gambler of sorts.

      R.

  13. Christopher July 4, 2014 at 12:42 pm #

    Oy, where are my manners… Happy Fourth!