Fear for the Future

Most of us know the sameness of our struggles. Most days are like the ones we finished and survived only one night earlier. Waking to another day of physical limitations can be numbing. I suspect most of us have come to grips with our daily obstacles. Our responses are rote. When we cross the same minefield everyday, we learn where it is safe to step.

I, for one, get lulled into passively assuming this is it. I’ve got it mastered, or at least I am okay. The Faustian bargain I have mentioned before has me agreeing to nobody in particular to live with what I’ve got, as long as it does not get any worse. That is a foolish gambit, of course. Such guarantees do not exist. And no one is in charge in the enemy camp.

When MS intercedes, I am not shocked, only betrayed. It is not supposed to be this way. But MS flares take a cumulative toll. My last one hit my back and weakened walking. My optic nerves have been attacked once more, and I have been pushed over a line I long feared I would cross. I spend more time at the computer correcting what I try to write than writing. All keys look alike to me now. I can and will live with this. Writing still is a joy.

What’s next? My problems seem to appear at night. It is a drag to wake up at dawn and begin my morning evaluation to identify changes in any part of my body. I get out of bed, wondering if I will just fall. The room is too dark to see and test my eyes. That judgment is saved for the kitchen when the sun is rising, as is my blood pressure when I move to fetch the newspaper in the driveway. The whole routine has gotten old.

I just know there is more to come. That wheelchair with the white cane propped against it still sits in a dark corner of my mind. Each day feels as if the wind has been knocked out of me. I am furiously working on my book. I want it to be finished before my dreams come true. And life goes on. You know. We will fight another day.



12 Responses to Fear for the Future

  1. Jan May 7, 2016 at 9:46 pm #

    This reminds me that oh my, this is not going away.

    I can’t just “simply” push through pain anymore (walking on painful wet noodles and sprained-feeling ankles and head pain just doesn’t cut it). Last week, when in CA also for our 25th Anniversary, I was in a luncheon spot restroom while my husband walked around the square (without me—I just couldn’t). Maybe it was a glass of wine (it was CA, after all), possibly.

    In my customary way (excuse me for being rather blunt, I feel), I bent over to line the toilet with TP (a customary thing for girl in a public restroom, I was taught), and had no back/leg strength to stand back up. None. I managed to scoot a couple of feet away and then just sat on the floor. Uh, huh, in a public restroom, even. And took a deep breath, looking up at the grab bar alongside. When I had a tad of strength to reach over and grab onto it and pull myself up, I managed to accomplish why I was there in the first place. And then continued on.

    Have to say that I’ve reached what I call the “line of demarcation” – marked by an out-of-state move, but ultimately the difference between just living life and really thinking about it and also its brevity and gravity.

    And how many people saw me totally struggling, stubbornly, in airline breezeways (on a different flight than my husband), when a wheelchair assist would have assured more comfort? Hmm.

    I, too, hang on to my writing – the one thing I can remember well and where I can be effective, be treated normally. Or maybe just think of myself in normal terms. I think that others care and do not feel my angst over witnessing my issues – certainly not as much as I feel the angst and frustration.

    “I’m okay” – my personal four-letter code word that really means anything but that.

    • Richard M. Cohen May 8, 2016 at 8:20 am #

      I get it and hope you are not getting worse too fast. Of course it always is too fast.


  2. Jan May 8, 2016 at 12:18 pm #

    Thank you, Richard. And yes, it is always too fast for everyone.

    I myself aim to work on eliminating “denial” as a coping mechanism, yet still keeping up with hope amidst reality, a hope still with perseverance and determination but a hope with more realistic boundaries, perhaps.

  3. Sue in TX May 8, 2016 at 3:35 pm #

    I wish a happy mother’s day to all! To moms, but especially to those without children, and to those without moms. I am without my mom. Progressive MS stole her from me a long time ago. So I am aware how this day is a reminder to the motherless of this particular void. But I have come to see that just as lack of health does not make us less worthy of love, the lack of a mother in one’s life does not decrease one’s value or lessen how we are cherished by others. Life continues rambling on despite these obstacles. Joyful milestones happen in our lives. And we can be o.k

    I admire your persistence and determination Richard. You too Jan. You both put words to the struggles I face. I am fearful of the future. But I have not choice to figure it out. I follow your lead.

  4. Jan May 9, 2016 at 8:32 am #

    Richard, I thought of your blog and struggles this morning. Your ending sums it up well: “And life goes on. You know. We will fight another day.” Yep.

    (Note to Sue: I’ve been trying to obtain simple directions from MailChimp for Richard to relay my email address to you after your prior request, just fyi).

  5. Sandy Stolaronek May 10, 2016 at 11:32 am #

    Every day I fight my fatigue, aches and pains and drugged and drunk-like feeling to try and feel as normal as possible. It strikes me dumbfounded that anyone would want to feel this on purpose and I’m talking about alcoholics and addicts. The only thing that’s different about them vs me, is that they actually have a high and this feels good to them but I have all of the physical and neurological effects of ingesting these substances but there certainly isn’t any high or good feeling. I guess I’m a little envious and at the same time I’m disgusted, resentful and angry at individuals who seek out this type of feeling and high in order to get so smashed that they see double, slurr their words and lose control of their balance and ability to walk a straight line. It’s definitely not fun for me and I would not seek to feel this way, even if there was a high involved. I get glimpses of what is coming, with symptoms that come on for a while, get better, until they are a permanent part of my constellation of symptoms and disabilities. These aren’t the only health problems that I face and they just seem to keep snowballing. I feel like my whole body has just went haywire, since I started suffering from MS and it’s out of control with no way of stopping this cascade of health issues. Was I destined for all of this from the beginning? Is this what was meant for my life? If so, what is it meant to teach me or what am I supposed to teach others? Will they listen long enough for me to tell them what I have learned? I don’t know the answer to any of these questions and I don’t know if I ever will but I’m going to do my best to teach anyone who will listen about my experiences and what I’ve been through and most of all, to appreciate life and all of its offerings and to appreciate a healthy body and not to take it for granted!

  6. Jan May 10, 2016 at 11:07 pm #

    For someone who aims to only read, I certainly do seem to “talk” a lot!

    Will say that, while I have had struggles with neither drugs nor alcohol, I do know those who have had issues with them. For those I know/knew, seems to me that their issues did not stem from simply having fun in a way but from deep seated hurts, challenging issues, poor coping mechanisms, and lack of self-confidence to take a stand otherwise. I myself have compassion for them. Not in an enabling way, but in a sort of situational understanding (and hard as it can be at times to see the healthy do whatever).

    I, in the past (and at times now), have judged in ways. But the longer I live and the more I experience life, the more I see and the more completely I realize that life just isn’t fair. It’s how it is – unfair to have MS; to breeze through life; to lose a spouse; to… (name an issue). But there are good things, too.

    Many, many years ago just prior to a choir concert, a neighboring singer said to me, “You know, people are too worried about their own appearances to even notice if you have a wrinkle in your white blouse.” Similarly, I’ve found that, while some may ask, I do better when I take an interest in others, listen, and let my demeanor do the talking unless specifically asked.

    And I will continue to aim to take those words to heart, with worsening health challenges!

  7. Jan May 11, 2016 at 10:34 am #

    “And life goes on. You know. We will fight another day.” And fight, many of us do.

    Richard, I am swamped but just have to say that I stuck around after my Today Show news to see Meredith interview Charla Nash, the woman mauled by a chimpanzee who received a face transplant. http://goo.gl/5JYMn5

    Wow, talk about someone who knew an earlier life (they showed her prior to the attack). And the issues she deals with on a daily, rather minute-by-minute basis. What really struck me is her steely determination, realization that every day is a new day, and spirit in finding joy.

    • r. cohen May 13, 2016 at 7:12 pm #

      Charla should be a role model for all of us.


  8. Kat May 11, 2016 at 10:48 am #

    Fear for the future is so difficult to let go of. Everyone should have a fear for the future whether they have a chronic disease or not. You never know what the day will bring. The scary part is that those of us who live with MS really know what our future could be. Even though I will always have a fear of my future, MS has enabled me to think about making the most of each day and being conscientious oh how I want to spend It. Thinking about controlling the things I can that bring me happiness.

  9. Dale May 15, 2016 at 12:47 am #

    Lately I’ve simply not had the ability to actually buy into the face I try to put forward most of the time. My mind keeps turning to the things I can no longer do. Funny having spent so much of my life being a cheerleader for everyone else I can’t seem to do that for myself. It’s made me resentful of my husband for little stupid things, like rearranging my kitchen cabinets or expecting me to be grateful for having a house even though carries a lot of baggage and memories of feeling very used by his family. And now I can’t get around a lot of it yet there is no move to invest in any modification like a ramp or stair chair. Even though it really did make the most sense, we sold somewhat in desperation and below market the little house I truly loved to pay for colleges. It was the home I intended to retire in. I was angry that there always this 1950’s sort of undercurrent of ‘head of the household’ power trip, I’ve been successful in my career, have a fabulous credit rating and more importantly right now carry the health care. My biggest fear is not being able to take care of myself, at that point why would anyone really want to live? Guess you really can’t “get it” if you haven’t “got it”. Maybe I just need to hire a cheerleader as in the past couple months I’ve gone from the happiest person on the planet to someone that isn’t sure she wants to play the game any more. It’s like Richard no longer being able to write (I found the speech to text programs inefficient) or Jan no longer being able to skate. I guess I’m not adapting very well at all lately. Thanks for the ability to vent, my physical changes and mental outlook in just the last month has been exceedingly discouraging.

  10. Jan May 16, 2016 at 9:16 pm #

    “Guess you really can’t ‘get it’ if you haven’t ‘got it’,” I think sums it up well (and gives me more patience for others).

    So very sorry about your struggles, and i can relate. But Richard’s next post and Charla’s “each day is a new day” resonate more and do help with perspective. Scary? Yes, it certainly can be. So one day at a time is likely the best we can do, and I remind myself of that.

    Things that may seem small to others can be rather huge–I remind myself of that, too. It isn’t easy to give up things. So I tend to hold on to the smaller things that I can hold on to. And I remind myself of comments from my family such as, “So you can’t do x and y.. you are still you,” and “We will just do our best to manage as best as we can,” and “If you need to use a walker to manage the “walk” from car to community center pool, do it.” I need to just plug along — in disbelief at times, but in disbelief if I must.

    And to give ourselves some breaks — today was a loaded day and I hurt more than usual. Not many smiles on my face, to be sure. So tomorrow I will be more realistic. And keep plugging on.