The Real Predator

I focus on a wheelchair in my mind’s eye.  The chair is slowly rolling toward me.  It is my personal Twilight Zone. I hear a wizened voice saying, sit down, dearie.  The scene provokes a gripping horror.   I cannot say I obsess on it, but the vision in the back of my mind is moving forward, apace with the wheelchair.  In the dark of dawn, I am awake, just thinking, imagining.  My grandmother and father depended on these chairs at the end.  My imaginary family photo has me in the same  metal device.  The image stays with me but under wraps.

I awaken and move downstairs.  I cannot see the glass next  to the sink and knock it onto the floor, shattering it and spilling whatever day old refreshment was in it.  I am back to reality.  I hobble outdoors and fetch the Times.  I have conveniently forgotten I can barely make out the headlines over articles on the front page and little of the stories themselves.  “Be patient,” the neuro-ophthalmologist tells me.  “It should get better.”  That is not my history.

I sit at the computer for hours, face pressed against the screen.  That contorted position allows me to see what I am writing.  My back hurts constantly, but it is worth it.  I am a writer by default.  For twenty-five years I toiled in the vineyards of network news.  Then the fine wine was gone and I became a refugee on the printed page.  Now this is what I do, and I wonder how long I will be able to go on.

I do not allow myself to contemplate sightlessness.  My imagination cannot go there.  Missing eyesight is likely to become functional blindness, the limited ability to appreciate light and dark, to see shapes and movement.  Words may be forever lost to me.  I may become more dependent on others, an especially horrible prospect.  Now my only hiding place is sleep.  The chairs appear only in the fog of waking up.

We are visually selective in what we see on the silver screens in our minds.  I own the theater and control the projector.  For now.  All I fear stays off the movie schedule.  How long I am able to remain in charge of my theater depends on the pace of worst-case dramas finally finding their place on the nighttime program.

Sightlessness is my secret nightmare, a secret even to myself.  There is a reason I have not written of the issue that has followed me for many decades.  The genie must remain trapped in the bottle through which I cannot see.  I cannot bear to know the future.

 

Twitter rmcjourneyman

22 Responses to The Real Predator

  1. David May 25, 2014 at 2:07 pm #

    I thought your last piece was so thoughtful. I too try to control the projector because I think I own the theater.I guess that over the last many years I face the fact that we often times control nothing but our attitude.

    I used to project such a good attitude for those around me but now know its mainly for me. The attitude is all we can control.

    With all of my disabilities I can only imagine what your limited sight must be costing you in suffering.I am not comparing our problems because we are all hurting in so many ways. I would bet that every person on your blog wants only good things to happen for all of us.I know that I wish I could make us all healthy again. I will wish that and Pray that and even Believe that too!

    • Richard M. Cohen May 26, 2014 at 12:40 pm #

      I agree. We are in this together. There is nohierarchy of suffering. We are on separate journeys, frequently traveling the same road.

      Best,
      R.

  2. MB May 25, 2014 at 3:09 pm #

    Who’s afraid of the MS Boogeyman? Me.

    My biggest MS nightmare is not being able to take care of my most basic needs. I tell myself if that day comes, I would take myself out of the game. Then the realization hits that if I’m incapacitated, that act is no longer mine to execute. What a conundrum.

    I keep myself mentally busy every waking minute because if I have any idle time, my mind transports me to a nursing home where I have short permed hair (because it’s easier for someone else to care for), unplucked chin hairs (because that’s not important to anyone but me), and bodily functions that are comparable to those of an infant. Talk about torturing myself!

    The MS Boogeyman is hiding under the beds of all of us who have been experiencing ever-increasing disability as a result of this illness. But I have to believe that my nightmare is the worst case outcome, one that probably will never be realized.

    I’m going with that for now.

    • Richard M. Cohen May 26, 2014 at 12:43 pm #

      Stick with that strategy. It sure works for me.

      Best,
      R.

  3. Joan L May 25, 2014 at 9:58 pm #

    This post really struck me. So sorry about your sight especially. I’m already in the chair but no eye problems. What a crap shoot of a disease. I keep the “enjoy the now” mantra going and some days believe it. Thanks for your honesty, it helps.

    • Richard M. Cohen May 26, 2014 at 12:44 pm #

      Joan-

      My best to you.

      R.

  4. L May 26, 2014 at 12:12 pm #

    Perhaps sharing the horrors of facing this disease without the rose-colored tint is the only way to raise awareness and funding for more aggressive research. The stories that have hit me hardest are those of Annette Funicello and George Bokos of The Greek from Detroit blog. Then there is Herrad of Access Denied: Living with MS. Pre-ms diagnosis, I had no idea…

    It’s unnatural to put away our brave faces to expose our weaknesses…at least it is for me. But what else can we do?

    So, thank you for putting that mask away a bit, sharing and raising awareness. You move us forward.

    • Richard M. Cohen May 26, 2014 at 12:46 pm #

      Joan-

      My best to you.

      R.

  5. Matt May 26, 2014 at 1:53 pm #

    This is a Debbie downer post. Stay strong as tough as it may be too do. Richard and all that have had the stem cell treatment you will get better, even if it is the little things like mine was like walking up the stairs with my coffee in my hand. I looked back at the stairs and looked at the coffee cup and said “shit I just walked up the stairs holding my coffee” it’s the little things now that excite me!!

    • Richard M. Cohen May 26, 2014 at 7:27 pm #

      Matt –

      I’ll settle for that.

      Best,
      R.

  6. Betty Moody May 26, 2014 at 8:27 pm #

    I’m swallowing hard on this one. Bear with me please.

    Her mother and my mother were sisters. Her father and my father were brothers. Check off the genetic component, a known ingredient in the Recipe for MS Success.

    Judy was three, and I wasn’t born yet when her mother (my mother’s sister) died tragically, struck by a vehicle with Judy in tow. Her grief stricken father (my father’s brother) handed Judy over to my parents to raise for a few years. I’m told my mother was a mournful mess over the loss of her sister; nine months pregnant with her own first born (my older brother), and suddenly she had a three year old to raise, too. Little Judy, a precious, living memory of her dead sister.

    Now check that recipe for my young mother’s life and stress in the 50’s. Add cigarettes, coffee, Wonder Bread, etc., and a PTSD husband home from Korea. Oh, and throw in her own first born baby boy, and the mother’s sauce thickens. I came along two years later, followed by another baby brother two years after that. They say that time passed, and the babies may have eased some of mother’s pain for the loss of her sister, or it could have pushed her off the deep end. How would I know? My father provided for us all, and he over medicated with hard work while Judy’s real father continued to grieve through three wives.

    All the while, and notable for the MS recipe we four children grew to be happy cherubs together in a raised-ranch in a nice neighborhood bordering on a large agricultural operation. Judy and I spent six formative years together in the backyard of the blue house on Crestview Drive. We swam in our little pool, and played with Barbie all day, and ate our PB&J’s on the picnic table while our farming neighbors not 100 feet away spayed their crops with DDT. And then there was The Mosquito Man. Always a summer favorite, he’d drive slowly through all the backyards every few weeks spraying a wide band of poison gray smog. We loved it then, “snow in July!” but it was probably the icing the toxic cake.

    Judy was six years my senior. We grew up as sisters. Fast forward, and she is married with children of her own. By her late 30’s the odd rashes, tingling, and numbness in her hands and feet that have come and gone for a few years can’t be blamed on childbirth, or a stressful job any longer, and she is determined to get to the bottom of it. We all know the drill… the tests and a spinal tap for her reveled the news. At age 40 Judy had a diagnosis of MS. She kept it quiet for a few years through a divorce, and her girls graduating from high school. She told me, and a few close family members that she was RRMS, “oh really?,” and seemingly doing very well, and that she had a good prognosis. “Oh, that’s great”. She worked full time, had a new boyfriend with a motor boat. We never talked much about “it”. No one was too worried. Time marched on. I married, started a career, and a family of my own. Judy and I were busy Mom’s in very different lives. We’d talk on the phone, and she’d would share an occasional MS up or down with me; news of new medications, needles specifically. Thinking back, I really didn’t get it at all. I had empathy and love galore, but never did I see more than I wanted to see. The dragging foot, the cane, then, the hand controls on her BMW. She was 46, always cheery, and stylish, in love, and “happy to be working from home”. Red flags.

    I’d had mononucleosis as a teen. I was 30 when I had shingles the first time. 35 when a finger went numb on a grocery cart. Weird, but not a worry. 39 when I put my boots on one day and realized that both of my feet felt numb. Quick to a local neurologist who was in hindsight too kind to give me an MS diagnosis, I sought a bigger hospital and a wise senior expert on the subject. I was alone, sitting politely with a notepad on my lap, and wearing nice, heeled boots on the day I heard the words. “My dear, it is in fact MS (paraphrasing), but the good news! … there has never been a better time in history to have such a disease. There is so much in the pipeline right now that will stop and or cure this, and other chronic auto immune diseases. It will happen in your lifetime. Get yourself some good sensible shoes, and live your life!”

    And so I rushed to Judy to ask her advice. She told me she had progressed, but this did not mean that I would follow her path. Always generous and optimistic she told me her greatest dilemma at the time was that she couldn’t walk very far, but had promised her 4 year old grandson that she would take him camping. A few days later I received a note with a picture of a little tent set up in her living room where she and Christopher enjoyed a campfire in the fireplace, and slept snuggly in their sleeping bags after many camp songs and friendly ghost stories. She wrote that “camping on ones knees with a small child was the way to go”, and added that her new wheel chair had just arrived, and that she’d let me know how it fit. (smiley face).

    By the following year Judy had retrofitted her ranch home with a hydraulic ramp. She was starting to lose her core strength, and the function of her right hand and arm, and she was shopping for a power chair. And on it went for 15 years. Her life. A challenging, active, productive, creative, love-filled life with MS, and she would say if she were here today that she lived it fully, and her way. And yes, (and I don’t make this stuff up), there was a new love in her life, (after the man with the boat), an amazing story of an old high school flame; they reconnected and enjoyed the deepest friendship and devotion to one another for some very good years, through very tough times. A very beautiful story for another day.

    I watched it all unfold before my eyes; through my own needles, and doctors, and MRI’s and highs and lows and deepest hopes and fears. Judy never lost her sense of humor, or her curiosity or drive to ease others concerns. With great strength and dignity she spent her last four years as a quadriplegic, but in her own home with a chosen partner, surrounded by kids, and daughters, and dogs and flowers and music. She conducted her orchestra.

    A rough winter brought respiratory issues in the spring of 2011. She was always firm that she’d go on as long as her lungs would. She said he would know when enough is enough. When it was time to go, she definitely called the shots. Now. The time is now. Her daughters, and best friend and I spent her last night with her. We slept with her, and by her, and on her, and we breathed each breath with her until she reached her peace at age 62. It was surreal. Three years later I’m still processing it all.

    And so, with 20 years of this disease under my own belt, and things getting harder every day I live to honor my fallen sister. She is my angel and my motivation to take every step and stay on my feet for as long as I can whatever that looks like. She is my role model for strength, and dignity, and hope in the face of the harshest indignities of this disease. She is why I am enrolled in a clinical trial to help advance MS research, and why I am thankful for every move I can make until I can’t. Every time I brush my teeth, or rub my eyes I think of her.

    Importantly I seek, and embrace new recipes to fight chronic disease. The ingredients are being tested and proven with realities of a cleaner environment, east meets western medicine, functional medicine and alternative treatment modalities; food as medicine, personalized immunology, and stem cell therapy. There are many proven options for experimentation, and management and there is a lot of it available on the shelf today. I believe that there will be a cure in our lifetime. We need to stay focused, hold hands and be there together for the press conference.

    I’ve gone on too long, but the more I get to know you all through this blog, the more your thoughts and words touch my heart, and stay in my mind. Please keep living, keep learning, and sharing, and above all keep hopeful.

    • Matt May 26, 2014 at 9:28 pm #

      I love this!

    • Carol May 27, 2014 at 5:37 am #

      What a wonderful, moving, well-told story. Thank you so very much for writing it. In my view, this has the bones for a book.

    • MB May 27, 2014 at 6:57 am #

      Thank you, Betty. Your sister is an inspiration. Hearing her story has caused me to reflect on my own attitude about living with this disease. I need to regroup. 🙂

    • Richard M. Cohen May 27, 2014 at 7:12 am #

      Betty-

      Incredible story. You should take over this blog. As horrible as MS is, we learn and grow and probably become better people. I admire ou.

      Peace,
      R.

      • Betty Moody May 27, 2014 at 3:55 pm #

        It was cathartic for me to bring Judy to this assembly of understanding. Thank you Richard for creating this space for us all to contemplate and share.

        Onward,

  7. Henriette May 27, 2014 at 8:55 am #

    RIchard, We are the lucky ones that you are a writer ‘be default’… thanks for that one, H.

  8. Jeff May 27, 2014 at 12:09 pm #

    What a moving piece Betty, thank you.

    As a 40 year old man with MS for 10 years now, these fears are constantly in the back of my mind. I started having issues walking last year and started the downward spiral of fear and withdrawal. Luckily, by happenstance, my wife met a woman who was friends with an counselor (who specializes in MS patients) and I started seeing her. I have grown so much in one year. The fears are still there but I am OK that what will be will be. Letting those fears occupy more than a moment of my time will give them more power than they deserve. As hard as it can be sometimes, we must live for today, it is reality.

    I know this is not earth shattering news to most of you and you have heard this mantra many times before, but couldn’t help but chime in. I recently posted a comment on another blog post here regarding another blogger with MS. I love this post of his and read it almost once a week to reset my focus. This post addresses many of the concerns discussed here and is very well written. Reality happens and we can decide how we let it affect us – happiness can be a choice. If you haven’t read it yet, I highly recommend it (link below).

    If you find yourself thinking “yeah – easily said when your not dealing with (insert your issue here)”, remember that Marc (who writes the blog) is confined to a wheelchair and only has use of one side of his body.

    http://www.wheelchairkamikaze.com/2009/10/footprints-and-shadows-tao-of-ms.html

  9. Geof May 27, 2014 at 2:06 pm #

    Richard, I think it is interesting to read your definition of functional blindness being unable to read the words on the screen. From your description, it sounds as if you fear the blindness of my daughter (born at 23.5 week). She puts her face right next to the TV to watch it. Her ophthalmologist is amazed at well she seems to see because after the reattachment of the retina and another eye surgery it was still thought her cataracts would make it impossible for her to see much of anything. However, she will still run with the other kids or find the toy she wants amongst all of the toys on the floor in the basement. We went to Jamaica this past winter, and nobody knew she was blind unless we told them. I hope if you continue to lose sight, you will gain her minds ability to make the most of the stimuli your eyes can absorb.

    What I have been fighting lately is a blindness of another sort. I can’t seem to process what my eyes see very well. When I am looking for something amongst a clutter, my eyes will keep passing over for what I am looking. It can drive me nuts. When I first had the problem, I was flaring and dealing with Christmas stress a couple of years ago, but lately it has become more frequent. I usually just call it my “functional blindness” because what good are the images if my mind can’t make meaning of what I see? In any event, I just found it interesting to read your post on blindness when the three types of blindness I am familiar with has been on my mind all week (my daughters, my functional blindness, and the all snow channel). The battle to control my self-talk has been going on in earnest this past week.

    • Anne May 28, 2014 at 1:10 pm #

      Thank you Betty for sharing your truly moving story.

      My older sister (age 58) was just diagnosed with MS. I was diagnosed 9 years ago, but have been told my first symptom was probably 17 years ago.

      After reading your story I will do my best to be an inspiration to her as your sister was to you.

      Thank you again.

      • cohen May 29, 2014 at 8:31 am #

        Nice thought.

        R.

    • cohen May 29, 2014 at 8:29 am #

      I know exactly what you mean by functional blindness. My story, too. But we compensate with other senses.

      R.