Independence Day

July 4th celebrates our nation’s escape from the tyranny of a colonial power across the ocean.   And so we cheer.   In this presidential election year, the candidates compete to project the strength and wisdom necessary to keep us free. Freedom is an important piece of our national identity, but is in the eye of the beholder. My large extended family sets off fireworks on a deserted stretch of beach every summer, mindful of the pride and power of that spectacle.

It is not lost on me, however, that the words, free and independent, mean different things to different people. Most of us, sharing our struggles and pain, writing in this space, agree that we are not free. And our independence is challenged each day. We are at a loss to do much about it.   We fight on, privately, indeed, quietly, and we do not give up.

We are not heroes, only survivors. There is no day reserved and ready to celebrate our struggle. Really, we are anonymous, never larger than life. Life rests at the center of our war with an enemy we cannot see. We fought on yesterday, as we will do tomorrow.

The nation does not honor us, nor does it pay much attention to the one in five of us who lives with a disability. Nearly half the population has at least one chronic illness. All of us are invisible, blending into the crowd that refuses to see us and shows no interest in helping us. And so, we celebrate our own version of independence. I, for one, am ready to continue going it alone. Someday our priorities will change, and we will acknowledge the terror of battling the enemy within.

11 Responses to Independence Day

  1. Jan June 30, 2016 at 11:41 pm #

    I am not escaping the tyranny of increasingly challenging and horridly painful health and now other troubles that make the former all the worse. One in five, eh? Wow… that is a lot.

    However, in this year of 2016:
    a) I have MS;
    b) Multiple sclerosis is indeed a disability (and listed as such on job sites);
    c) Well, a+b=yep, easy math and an admission to myself.
    d) …and so what?

    Therein lies my admission. We here are all too likely aware of the health “so what” portion that I am not minimizing, from pain to job loss to discrimination to limitations to ______ (fill in the blank).

    But I am finally finding some emotional independence in that admission. It is what it is. And I still keep pressing on each day as best as I can. Some joy, even — do you know that kids working at grocery stores really love the break of riding the store scooter back into the store after I get info my car? I was first enlightened to that by my son who works as one. A joy, not a hassle!

    Other instances, as well. So, my attitude amidst it all is still key.

  2. Jan June 30, 2016 at 11:45 pm #

    oops… my son, who works AT one, that is… I also realize that others cannot drive. “All we have is today,” says a friend who lost a young spouse. Days may not be easy in whatever ways. One day at a time; sometimes one hour or less at a time, and I just do the best I can.

  3. Jan July 1, 2016 at 12:09 am #

    And as I see it, so much is taken away, so many icky things to deal with… but the freedom that will always remain is the choice as to how I choose to respond.

  4. Sue in TX July 2, 2016 at 6:32 pm #

    Yes, Richard, we fight on, privately and quietly. What choice do we really have? Someone who doesn’t live with MS doesn’t really know. Doesn’t know that the ADA doesn’t protect people with MS from a job application at a state university which gives 3 choices to check: I have no disability; I have a disability; I choose not to answer.( A No answer isn’t a really a non answer though, Is it? ) Doesn’t notice that sedentary desk jobs often come with a specific requirement to be able lift 40lbs.? (Ha, ha, those staplers and reams of paper can be soooo heavy). Doesn’t realize that It’s hard to ask for a reasonable accommodation after being hired if you lied about the first two items. Someone with no experience with the impact of MS on the body doesn’t know that when lack of muscle endurance and strength, or mind crushing fatigue prevent you from working a job, long term disability benefits are not paid out unless these subjective disabilities are proven to the satisfaction of the insurer.( Unfortunately, there are no real checks and balances on this federal law ERISA system – Google unfair LTD practices if you are confused.) We fight on though. Refusing to be marginalized from life. Nevertheless, there are some (think advisor for one the presidential candidates) That think SS disability is a racquet, a replacement for welfare, and should be cut, especially for those under 45. Someone who
    Doesn’t live with MS hasn’t read the national ms society’s advice to maybe not have a face to face interview with SS when applying for benefits if you “look good” and to understand that mobile people with MS are typically denied SS disability. I ask someone without MS to look at the financial incentives for an educated person in their prime to work a professional job and have health insurance vs. living below poverty level on amounts SS disability will pay to a person (so long as this person can meet the qualifications of SS for being disabled from MS.) Otherwise, this person remains in the ranks of the unemployed, Dependent on others or charity. Why are people with MS so unprotected? Dependent. Not free?

  5. Jan July 2, 2016 at 11:17 pm #

    Will say, excellent points, Sue.

  6. Jan July 2, 2016 at 11:17 pm #

    Will say, excellent points, Sue.

  7. Sue in TX July 8, 2016 at 4:27 pm #

    Thanks Jan. I appreciate it. I will say I find blogs sometimes a difficult place to commune. It’s virtualness gives me anonymity and helps me to share my feelings openly. But My private journey goes on in between posts. My struggle is mostly private, almost invisible. So I find it cathartic to sometimes share and have a place where others understand even if they feel differently. But there are times that i feel alone in this, even here, like I’m shouting out over a dark canyon on a moonless night and hoping to hear a return yell or even An echo. But I listen and strain to hear and there is nothingness. Does anyone understand this journey I’m on. ? Can anyone help me find my way? I’m getting lost.

  8. Ann July 9, 2016 at 7:39 am #

    Yes we hear your pain. We deal with it daily, or not depending on our strength for the day. Solitude is a common symptom of this disease. “Looking so good” means they are not truly looking. Or maybe they are looking but not listening or feeling.
    I have been going through my own trials trying to maintain health insurance since my husband retired. I did find a plan that covered my important doctors and my important medications. Unfortunately I am finding it difficult to pay the monthly premiums and the large deductible this month. I could cash in my retirement savings and pay a penalty on my tax return because I am to young to be retired. Plus the additional income would disqualify me for any health insurance help from the government.
    The past two weeks have found me trying to fill my prescriptions, Avonex being the big one. I was directed to call their mail order pharmacy if I wanted three month supplies of my medications. I called their mail order pharmacy after seeing my neurologist and getting new scripts. They were fine with my order until I hit Avonex. I was told they did not have Avonex. As you can understand, I freaked. When I called the insurance company, they said Oh you have to use a different pharmacy for that script. So I called the next pharmacy. Yes, they could fill the script but only for one month at a time. This means after my first copay of 1400.00, I would have to pay 125.00/month for the rest of the year. If they could do the 3 month script I would pay 125.00 for each 3 month supply.
    In talking to this new pharmacy, it turns out they managed my old insurance medications. They have always been able to provide 3 month supply of Avonex. But they can not do it now because of the new insurance company. The blessing came when that company gave me a phone # to Biogen (the company who makes it).
    Sorry this is so long,almost done:) I called Biogen, signed their pprwk over the internet, and explained my problem. They ran my #’s and I am in their program that will cost me no copays for the rest of the year. This only applies to my Avonex but it is the expensive one.
    My suggestion to you is do not stop trying. Even if you get a bad answer try again tomorrow. Think of someone else to call. Ask the people you talk to for any information they may have. You would be surprised by how much info is stored in the receptionists of the world.
    I wish you the best of luck as you traverse through our mucky world of MS.
    Another thought, keep smiling, it may not help but it will keep those around you wondering why you are:)
    Please forgive length, spelling errors, and …………

  9. Jan July 11, 2016 at 10:49 pm #

    Ann, the Dora quote just came to mind, “Keep swimming, keep swimming…” Actually, I am doing just that (even if walking before and after is nasty).

    Today, a kind person at a car appointment at the end (in the afternoon heat, my walking struggles were rather apparent, even with the cane) asked in a nice way if I’m in pain (I forget it is not noticeable because I always feel it but smile just the same). While I did say, “yes, and I have nerve pain,” I later had wished that I had said that I am in a way a walking Lyrica commercial, though I have neither diabetes nor take that. It would have given a more relatable picture of my feet pain.

    (Actually, a neuro–long story; I’ll go back to my regular one because I did not find the MS exercise PT from him as I had thought–anyway, he gave me a sample pack of Lyrica. Only I’m 95% sure I won’t even try it and instead stick with Lidocaine patches at night. I’m meds-sensitive and don’t like side effects, especially ones that mess with thinking).

    Back to my replies… Ann, sorry to read about your meds hassles. I so long for “status quo,” but something always seems to arise. Good that you kept at it.

    Sue, you do not strike me as someone who is getting lost. Then again, perhaps what you said is indicative of how we may all feel at times. One day, it’s feeling settled in whatever state; another day it is unbelievable and foreign.

    Richard, I think you know that I’m not one to give up easily. (Who else would have a uroflowmetry at Mayo, have insurance flag going to the bathroom alone as “major surgery” that would have cost me $400 more and have me bound and determined to right that injustice? And with it taking two years, 100 phone calls, written appeals to four places, a conference call with the AMA, and finally a drop-in visit (no way to get the phone number) to my then insurance co.? The cost yes, but it went beyond that into principle. (Nice people along that route and at most places who all agreed; worth my writing 17 handwritten thank-you notes to those who tried to help and were equally appalled).

    So Sue, by that little story I mean to say that I’ve been trying to ask Richard to relay my email address to you as you had requested earlier, and I still have that in mind. Not to give Richard more work or to open up a can of worms in everyone making that kind of request, but given what you had written about understanding, feeling lost, and finding your way, I wanted to try again.

    Richard, thoughts? (If an email address then to my personal address, not here on the blog, please). And, I hope your book is coming along well and that the work is encouraging to you.

  10. Sue In TX July 25, 2016 at 1:13 am #

    Ann, thank you. I had a similar issue and run around with my insurance coverage for my DMD. The manufacturer is paying my copay up to a point now. [ I point out This should be the exception to the rule, not routine. Who is protecting our health interests other than ourselves? Market forces?] But Ann, you gave me reality check, I’m not the only one . My battles are being fought by others in my situation. Jan, I’ll keep swimming and maybe your optimism will rub off on me. I also think I know how to reach you….

  11. Diana Carter July 27, 2016 at 2:47 pm #

    I hear you Richard. Shout as loud as you can shout, I am shouting with you only for my echo to shout back at me. I enjoy being alone with this dreadful Monster. I curse it each and every day, but the more I curse it the more challenges it seems to bring upon me. I want to give into it but then again I have to tell my demented brain NO, do not give into the unknown. If a disease is unknown, a cure is unknown, then I have to give a slight notion that possibly someway somehow a miracle will happen and a cure will miraculously appear.