Christopher

 

Most of us have not met, or so I assume. Yet I feel I have crossed paths with many of you.   When I see familiar names over blog responses, I can make pretty good guesses about what to expect.   Christopher, when I spot your name, I assume a high level of knowledge is headed my way. I know nothing of your personal life. TI believe tere have been hints you live on the West Coast, which probably means you are in Nebraska.

What I wonder is if you live a “worst case scenario.”   I do not. When I write about the

disappointments I carry on my shoulders, I am acutely aware that others face a tougher journey. In that regard, I am a lucky guy. That makes writing a blog difficult because there is no average experience with MS or any other illness. It is easy to sell the utility of personal strength and virtue of independence when I still am on my feet and able to go to work. I cannot write about hopelessness when I do not know it.

Christopher, I believe we all bleed for you. You have given us much and there is little we can do for you in return. Please know we are in your corner. I myself owe you because you consistently add dimension to much of what I write.   I wish I could reach out to you through a computer screen and across miles of fiber optic cable. We are your friends≥

27 Responses to Christopher

  1. JoanZ October 6, 2017 at 3:32 pm #

    I am not at all sure how the Universe works, but I do believe thoughts and intention are powerful. Christopher, I’m putting energy & intention towards any little thing which eases your life. Hope others will as well. Peace & Love…Joan

    • Christopher October 9, 2017 at 5:51 am #

      Thank you, Joan. I appreciate the extra energy–I’ll put it to good use.

  2. Jan October 6, 2017 at 9:04 pm #

    Richard, well put. Christopher, please think of the value and connection you impart and do so amidst such nasty challenges, too.

    In the words of Goethe, “To know someone here or there with whom you feel there is understanding despite thoughts expressed, that can make of this earth a garden.”

    Sending a fragrant rose to you.

    • Christopher October 9, 2017 at 5:39 am #

      Thank you, Jan.

      I like your Goethe quote. It reminds me of an elderly lady on the bus I met once about a year ago. Her English was woefully broken, and the other people just ignored her. I could tell she was in distress, and noticed her box of groceries was falling apart so I asked if she needed a hand and offered her the box I brought home from work. I don’t know what I was thinking because I could barely get out of my own way let alone help anyone else. She said something in Vietnamese and bowed her head a few times. When she went to get off at her stop I stupidly told her to have a nice evening, and that I hoped she would feel better soon, in English. She just smiled, put her groceries down, and took out two very nice looking pears and handed them to me. I told her I couldn’t, and thanked her. She just smiled, mumbled something, and placed them in my hands and patted my hands. Then she gave a big smile and went on her way.

      If that isn’t an unspoken understanding, then I don’t know what is. She represents… no, she is the best of what makes us… us.

  3. Jane October 7, 2017 at 10:09 am #

    Christopher, you are an invaluable asset to all of us. Thank you.

    • Christopher October 9, 2017 at 5:42 am #

      Thank you, Jane. But I also wouldn’t be mewithout all of you.

  4. Dale October 8, 2017 at 1:11 am #

    Hang on Christopher…. you have no idea of the positive impact you have made on so many of us. Hope through understanding. It has been huge for me. Thank you seems so limited butt sending prayers for recovery and strength to keep going..

  5. Christopher October 9, 2017 at 5:45 am #

    Thank you, Dale. Prayers are appreciated as much as anything. We all need all the help we can get.

  6. Christopher October 9, 2017 at 5:49 am #

    I apologize… the following is pretty long, but with good reason.

    Thank you for all your positive thoughts. I wish as much and more for all of you.

  7. Christopher October 9, 2017 at 5:57 am #

    Sometimes I dream about living in a small, rural Midwestern town. The allure of laid back autumn harvest festivals, an unsophisticated cup of coffee at the local diner, and uncomplicated days of rocking in a chair on the front porch watching the sunflowers wave in the wind is really appealing, if not hopelessly idyllic relative to the phony-baloney insanity of suburbia. But, no… I’m definitely on the ‘left coast’ way out West. Orange, California to be exact. Though the city where I live resembles a small town, it’s somewhat misleading. I live about 7 miles from Disneyland, and about 30 miles from downtown Los Angeles proper. Please don’t misunderstand… I’m a native Californian, born and bred, and I would find it very difficult uprooting from my terra familiaris.

    I really appreciate your words of support, Richard. And everyone else’s here as well. It means a lot to me. Especially that I may actually be making a difference, if even only in small ways. I always intended to share my experiences so that they might inform others somehow and hopefully help in some way, or at least help lessen the burden of this dreadful disease. But just the activities of daily living take up so much time that I’ve had to put those on hold indefinitely. I wanted to chronicle my experience with this most recent road-fork in my life, but the place where I’m currently residing uses such Orwellian web filters to keep their employees in line that I can’t even access my own blog. To some that may not sound like something to whine about, but I am losing an incredible opportunity to use my misfortune to inform a wider population about many issues that need serious consideration. That’s why I posted here about some of it. I knew that at least knowledgeable people would get my messages to the outside world.

    Worst case scenario? I don’t know if I can accurately answer that, Richard. At least, not objectively anyway. My situation is pretty awful, but it could definitely be a lot worse.

    I took a couple of months of FMLA leave from work on June 1st to catch up on rest and physical therapy. At the same time, without prior knowledge, my whip-smart primary care doctor, and my super compassionate HR director at work both made transitions to other employment elsewhere. So I was left with a neophyte millennial primary care doctor freshly minted, and a new HR director I had yet to have the awkward initial meeting with that’s de rigueur for people with disabilities. Then halfway through the LOA my power chair broke down and I was literally stuck on my couch for 4 weeks. I had to fight with the power chair company the entire time to get them to move faster. They finally picked up the chair the weekend before I had to be back at work—it took them two days to repair it (arrgh).

    Very stressful, and probably what threw me into a major relapse a few days later. I ended up in the hospital for a week on steroids for the relapse, then sent to an acute rehab to recover. I was doing really well recovering for about a week, then I suffered another major relapse. But this time it was caused by a massive infection, which became sepsis, that was triggered by the steroids. So back to the hospital for another week on high dose antibiotics, and I had to be closely watched for the first 72 hours by a special sepsisnurse. After the week of ABx I was sent to a nursing facility because I was in such bad shape it would take too long to recover in acute rehab. I was also unceremoniously ‘shown the door’ at the hospital for asking for a couple extra days to find a good nursing facility, because I wouldn’t accept the awful facility the hospital social worker was pushing on me.

    Now I have been at the SNF (skilled nursing facility) for 48 days of pure hell. I have wanted to write about the experience on my blog, but I’m blocked by the totalitarian-like WIFI filters here (mostly to keep the employees in line). I was recovering with physical therapy, but because of the extensive neurological insult from two heavy exacerbations, the recovery was incredibly slow and I couldn’t chance using steroids again. So without the kick of the steroids, and the lack of neurorehabilitation knowledge by the physical therapists, I wasn’t making enough headway in the therapists minds and they documented as much in their reports to my insurance, which then canceled coverage as they declared what I was receiving as “custodial care” instead of skilled nursing.

    I have spent the last two and a half weeks fighting insurance denials, and losing any previous improvement in nerve recovery because there’s no therapy now. All of this is so very stressful, which is destructive as well. I now also worry about where I will receive therapy as all of my alloted yearly coverage has been used up, I have been away from work going on 5 months now so I am only receiving half of my normal salary in state disability, and wondering where this will lead since I still need 24 hour care as I can’t even bathe or go to the bathroom or get up from the bed by myself yet. The day to day awfulness of the overcrowded, unhygienic, and psychologically unhealthy facility is another story for another time. But to say the least, it has been a very unfortunate year for me. I have never been so unsure of my prospects of any recovery to go back to my life, or been so close to losing everything.

    Worst case? Maybe. But I have to keep fighting to move forward into unknown spaces because I keep thinking about the people worse off than me. I fight for them, and all of you, as much for me.

    • Jan October 11, 2017 at 1:24 pm #

      Ah, move over, Jan–Christopher now takes the prize with the longest post reply. (Whew; maybe Richard will then extend patience with mine at times, although he has never complained about them).

      Seriously, I appreciated reading your thoughts. But also so sorry for what you endure, as we all are. I myself tend to not think about it too much and just do as I am able, including even crawling at times (and leave the concern to my husband–understandably, as I can still think I should be age 35. The problem is that I can carry on that way).

      And insurance: my experience has been mostly nice people whose hands get tied with computer codes. They don’t deter me. I likely mentioned a Mayo test years ago in which I went to the restroom alone: it was paid, but under “major surgery,” to the tune of $400 more for me (at first). Neither the cost nor principle settled well with me. Corrected after two years, 100+ phone calls, a conference call to the AMA, and a “walk” in to a nearby behemoth office.

      Today, I sent in a 26-page fax to try to get a certain mobility scooter covered under insurance. Who knows, but I’m saving huge DMD expenses–the scooter is a drop in the bucket to insurance, but big to me. Hope this won’t take so long.

      And there’s nothing quite like autumn, caramel apples, red leaves, and pumpkin fudge in the Midwest, I will say. Well, until February comes–brr. Nice that you are in the L.A. area. I have three friends around there.

      But not good if you were a 22-year-old working for the L.A. Kings who was killed in LV. Horrible. Too much awful stuff all around. Please know that you are doing the best you can, and that you have impacted many in helpful ways. Your anecdote of the woman on the bus speaks in ways that language cannot and also gets to the heart of meaning, of how seemingly small ways can be huge.

      And before I take back my title of “longest post replier,” I shall sign off.

    • Dee October 12, 2017 at 11:31 pm #

      Christopher, I actually went to your blog today to see if you had an update. Glad to find your post here.
      Sorry for all you’ve been thru. Prayers for you to get home.
      Dee/OH

      • Christopher October 13, 2017 at 1:40 am #

        Hi Dee. Thank you.

        Sorry I got your name wrong on the blog. I was bleary eyed, and using my cell phone late at night when I replied to your post. I haven’t been able to post on my blog because the nursing facility where I’m at has really restrictive wifi… guess they don’t want quadriplegics watching porn and buying medical weed. Other than that I’m learning a lot that I hope to eventually get out to a wider audience–people need to be informed about the serious problems in places like where I’m at, and the need for much better understanding of MS by doctors, medical professionals, and especially medical insurance companies.

        We all need better advocacy. It’s imperative.

  8. Jack October 9, 2017 at 3:15 pm #

    Christopher, I am one of those who often reads here but seldom comments. I pay special attention to your posts because I know that I always learn something important from you. If only I had the right words or the ability to give you some comfort.
    I am sure that there are many like me who stay in the shadows on this site and for whom you have become a valued resource and a trusted friend.
    I wish you the strength to get through this very difficult time.

  9. Christopher October 9, 2017 at 4:00 pm #

    Thank you, Jack. I understand about staying “in the shadows” pretty well–I’ve been a semi-professional ‘fly on the wall’ most of my life. I appreciate the well wishes.

  10. Sue in TX October 9, 2017 at 11:02 pm #

    Christopher, I am just now reading of your situation. I have been treading water lately. I echo Richard and other’s sentiments here. I pray for your perserverence and strength of hope.

    Today, I got angry at a movie trailer for Breathe, a movie about the remarkable life of a early pioneer for the paralyzed. It showed the protagtonist man on a ventalator being joyfully wheeled down the beach by his loving wife – life goes on. music plays. I scoweld at my husband. This will not happen for me, I told him
    We do not have the money for me to enjoy the beach in such condition. My husband has already promised to not prolong my life if I require life prolonging intervention. But today he pleaded, he would want to prolong my life long enough to see if I would recover, he refused to jump to judgement. He had seen how low MS can bring me and how much I can recover.

    I hate MS Christopher. I hate that you are suffering. I know though that our bodies can show amazing resilence. Our spirits can help push us through. Don’t give up. Trust in God or the univerise or whatever is good that you will recover again.

    Try contacting your state nursing home Ombudsman to advocate for you. Maybe you can assert you need a rehab center with aqua therapy? You also have the right to range of motion exercises and air conditioning. Assert your rights. Take care of yourself. I send positive energy your way.

    • Christopher October 13, 2017 at 2:25 am #

      Thank you, Sue.

      I don’t know how far you’ve progressed so far with MS, but I understand your frustration–especially with a movie commercial. It’s hard for me to watch anything that reminds me of my limitations, whether physical or financial or anything else. Your husband is a great guy to be your cheerleader like that. I would hope that you could eventually walk on the beach yourself someday.

  11. Jeanne October 10, 2017 at 11:11 am #

    Christopher,
    I’m so sorry that you are going through this. You are a remarkable person and you deserve better. You have helped many other people in your life and not everyone can say that about themselves. You are loved.

    Grandma Jeanne

  12. Christopher October 13, 2017 at 2:44 am #

    Thank you, Jeanne.

    I think all of you are remarkable. Especially the way you and everyone else here open up about your lives to share experience, and the compassion and support you show each other. It’s not as common as you may think, but very appreciated.

  13. Ann October 15, 2017 at 1:07 am #

    Christopher,
    I pray that your world gains a foot hold of peace in the madness. Everyone here receives my prayers every day. I too have gone through some stress this year and am grinding through the madness. My husband has been diagnosed with dementia to go with my MS. The good news is my computer and research skills are being put to good use. The bad news is neither of our futures bode well for our finances and general life. I’m sure we will eventually have to open our lives to in home care or maybe worse. As a former financial rep and tax person, I know the madness of finances and face many of your same fears.
    On the other hand, remember my mantra “Always keep smiling, it makes others wonder what you are up to:)” As others have said, your contributions to this group are many and appreciated. I will keep praying for you.
    As an aside, I would love to find your blog but need a hint to find it. Maybe Richard could forward a hint. It will not make me leave Richard, because this is one of the best places for me to hang out.

  14. Christopher October 16, 2017 at 12:03 am #

    Thank you, Ann. I wish some peace for you as well.

    I try not to give hints because that can seem too precious or smug, and I’m actually surprised anytime anyone reads it (it’s not light reading). But definitely, here’s the URL…

    http://www.edgeofthedivingboard.com

  15. Ann October 16, 2017 at 9:01 am #

    Thank you Christopher:)

  16. Jan October 19, 2017 at 10:00 pm #

    Hey you, Topher… thank you for sharing your link and brave story. I wish I could say something, something to make it better. Just know that you are heard and have had impact, value.

    We have great empathy for you. Please know that people care. Many things I do not understand at all, but at the very least we hear you and care.

  17. Jan October 21, 2017 at 9:52 am #

    Folks, I think we need to be careful and discerning regarding what we read. On LinkedIn, someone well-intentioned put up a post with a quote from Napoleon saying that, “Impossible is the word to be found only in the dictionary of fools.“

    I replied: Cannot say I like that quote: a bit shortsighted for some.

    Well in addition to a little pun regarding the quote author’s name, quotes are made by people and often with limited perspective. Hopefully my reply will educate some that no, that quote isn’t inspiring to everyone.

  18. Louisa October 21, 2017 at 4:46 pm #

    Yup, one of the first things I came to hate about MS was how so many inspirational quotes don’t apply to me anymore.

  19. Jan October 22, 2017 at 6:49 pm #

    Louisa, the up side is that everyone really should likely be personally insightful and not rely upon others in that way. Inspired at times, but not all reliant upon another human.

  20. Christopher October 23, 2017 at 5:06 am #

    Jan,

    First thank you for your kind words of support. It means a lot too me, and those words help a lot to push me through rough times, because their power comes from a very real and compassionate place. They have their own type of eloquence that can’t be patterned, and you definitely know there’s a real person writing them.

    That other type of language that seeks to inspire is purposely patterned from a generic collection of ideals, where the speaker is usually removed from sensing their own humanity. So it’s no wonder you see right through its contrivance, and basically it bugs you. Where one is personal and sometimes awkward and imperfect, the other one is too slick and tailored to convince it came from a real, flawed person who truly understands the unpredictable nature of your condition.

    I think Eric Idle sums it up quite nicely in The Life of Brian…

    https://youtu.be/WlBiLNN1NhQ

    I prefer to think there’s room for hope, and it’s a sign of not giving in or giving up… not a silly childlike naivete.

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