Coming Up for Air

Sometimes the light flickers, then clicks on. It is an epiphany demonstrating my flair for the obvious. A cheerfulness and sense of humor belie the darkness that surrounds. That foreboding sense of being trapped deep underground weighs heavy. It is a load that is hard to lighten. I recently came through an exceedingly rough patch. I cannot explain my façade of tranquility that is so personally important to maintain.
I probably wrote of my vision loss a few months ago, coupled with a new weakness in my back that translates to walking expeditions with less distance traveled. I am not sure what I wrote, but I assume it understated the gravity of what I lost. I do not spend time worrying that now I mistake plants for animals. The distressing part for me is that I have crossed a border, just what I have dreaded for so long. I am losing the ability to read and write in a high functioning manner. I experience this anew every day. I expected this day was coming someday.
Details are not important here. The point is, I need to come up for air. I need a time out. I have to get a grip, to stay calm, assess and reassess the situation and refine the plan that has emerged in bits and pieces ever so slowly. This is important. We know that progressive diseases progress. Anyone who is shocked that life only gets harder has missed a rather important point.
There is nothing to be gained by beating my breast or crying out to the heavens. Wailing only hurts your ears. Weighing a new reality and considering options seems more constructive. I have survived this illness for more than forty years. Why stop now? Coming up for air is not an easy swim to the surface. I have written that chronic illnesses are in no small part a mind game. We have to keep it real but push away even subdued hysteria. There is no time for that. This is more complicated than, say, building a wall along the border with Mexico.
This, too, shall pass. Life goes on.

29 Responses to Coming Up for Air

  1. Sue in TX August 24, 2015 at 6:37 pm #

    Yes, yes Richard, I understand. We understand, too much. Regroup. Refocus and find center. The sun will rise.

    • cohen August 25, 2015 at 8:06 am #

      Regroup. Refocus. And run.

      R.

  2. Jan1 August 24, 2015 at 11:12 pm #

    Richard, I am so very sorry. Yes, life does get harder (I knew that, but now I’m relating even more by really experiencing it from most angles, including increased constant pain). Denial is not serving me too well these days, have to admit. Short-lived tears provide but a momentary release.

    Your mention of swimming reminded me of a bright spot in my day; also, a similar-aged stranger who joyfully struck up a conversation outside side-by-side handicapped parking. We talked until the TX heat became too much. (And then exchanged phone numbers for a future coffee time).

    But still, good for you for doing what you can do. Much a mind game, yes. Perhaps increased technology will (though not the goal) serve you where health does not. I, too, am paring down excess (out of necessity). And we are not fish; diving deep but then coming up for air is okay–it has to happen to survive.

    • Richard M. Cohen August 25, 2015 at 2:23 pm #

      Yup.

      R.

  3. Dale August 24, 2015 at 11:35 pm #

    I get it. I totally do.

  4. Yvonne August 25, 2015 at 11:01 am #

    Sometimes swimming up for air is exhausting so you hold your breath as long as you can then burst through to the surface gasping for air. We stubbornly refuse to acknowledge we’re different and struggle to be perceived normal because the darkness of what’s to come is overwhelming. Canes, walkers, wheelchairs or complete immobility looms so we continue to believe we can “hold our breath”. I am trying hard everyday to cope with my progression but all the folks saying “you’re doing so well, it could be worse” are not helping as they are not in my body gasping for air. Our only choice is to surface when we can if we want to keep breathing. I hate MS more everyday and I’m trying to get through this new progression so I can resurface as Yvonne 3.0

    • Richard M. Cohen August 25, 2015 at 2:26 pm #

      Go for it, but please make sure you have reached the surface before you gasp.

      R.

    • Jan1 August 25, 2015 at 4:48 pm #

      Yvonne, have to say that “I get that: all of what you said.”

      And yes, reaching the surface, Richard, is indeed important before gasping for air.

      On another note, I am still haunted by knowing about a 20-year-old who drowned at Indiana Dunes recently. I myself will only swim in pools–have enough of the unknown surrounding and bumping into me constantly.

      And wondering if someday I will awaken from this nightmare. (Yes, I know… denial in full form). Ignoring and distraction are not working too well, even though I still press on.

  5. Christopher August 25, 2015 at 12:04 pm #

    The doctors are worse. Very few tell the whole truth, even still more don’t understand what that is and just give a ‘Disney-esque’ diagnosis of hope. Then they smile, pat you on the back and say, “keep positive.” Then you wait another three months for an agonizing repeat.

    Keep positive… what else is there.

    • Richard M. Cohen August 25, 2015 at 2:28 pm #

      For docs? How about keep quiet?

      R.

  6. Joan Z August 25, 2015 at 1:44 pm #

    Amazing how much energy it takes to stay ahead of the always moving (too far & too fast) goalposts. Yet somehow we all keep trying. I wish there was some flavor of ice cream that fixed us. I’d happily send you a truckload.

  7. Sue in tx August 25, 2015 at 4:24 pm #

    Richard, I appreciate that you so publicly expose truths about MS by writing about your own experiences. mS makes us purposefully
    choose where to use our energy. It makes us selectively pair down our employment, our activities, and our relationships. It’s a life long diagnosis so We get experienced at compensating for our weaknesses, which can sometimes belie others into thinking we are not really that ill. That it’s business as usual. But it’s not. Is it? I know that after your “time out” you will know what to do. We wait with you.

  8. Jenny August 25, 2015 at 9:06 pm #

    Isn’t every moment of every day a time we grasp for air? We know MS doesn’t really “remit” or go away. We all should take a deep breath and to the best of our physical and mental abilities steam ahead.

  9. Ann August 25, 2015 at 9:44 pm #

    Hello everyone. I have frequented this blog often but have never contributed. I hope what I ad to this conversation will help not hurt.
    As I read through this section I can only think of my brother. The two of us shared this MS fun with each other. We each had our own type of MS with his being the worse version. As I listen to your voices, it brings back the conversations we shared, the hopes and dreams we had as well as the pains we all feel in our hearts and minds. I want to thank you all for your sharing as I no longer have my brother to share with. Your sharing brought him back to me for a short moment and I truly thank you.

    • Jan1 August 26, 2015 at 2:08 pm #

      Hi Ann, I personally think that anecdotes you add from your experiences and heart are helpful. (It’s Richard’s blog, but I think that it is okay for me to say that).

      First of all, I’m very sorry about your brother. And that both of you have dealt with so much. It’s somewhat hard to really describe to others who don’t experience MS issues or who don’t live with those of us who endure them what it truly is like.

      I also am appreciative of the stories, candid thoughts, ideas, and sharing. Especially now, with really tough stuff happening that is so all-encompassing.

    • r. cohen August 27, 2015 at 8:11 am #

      Thank you for that. Memory is bittersweet.

      R.

  10. Pam I Am August 25, 2015 at 11:50 pm #

    I never learned to swim…couldn’t even float properly. Just spent my time in the pool flailing my arms about; trying to figure out how to join in on the fun that came so naturally to everyone else.

    Richard, I also recently came out of a very bad episode (3 weeks in the hospital) that has me flailing about, both figuratively and literally. I have been told I have a “challenging” case because my reality doesn’t fit into any of the fill-in-the-blanks, categories, checklists, or charts that doctors hold dear.

    I’ve come to the conclusion that we’re all just guessing here and managing the best we can. My way of dealing with the progression of my MS is to stop floundering and just allow myself to drift while I fully experience any small joys along the way.

    I long ago lost my ability and desire to write well. I have so admired your beautiful writing and look forward to your next effort; whether a blog entry or another book. Take all the time you need with as much air as your lungs can hold!

    • r. cohen August 27, 2015 at 8:16 am #

      Thanks. I think we are guessing and making it up as we go along. There are no hard answers, only the need to tolerate ambiguity.

      R..

  11. Sandy Stolaronek August 26, 2015 at 12:05 pm #

    I understand this completely, as I have been losing more of my eyesight every 6 months it seems. I have never had an episode of ON but my eyes just keep getting blurrier, as though there is fog in the room or a film of Vaseline on my glasses. This is something I did not expect will be happening to me, because I haven’t had much problem with my eyes in the beginning, just some sharp, stabbing pains here and there. But, if my eyes are going to go eventually, I would rather my legs go first, so I can zip around in an electric wheelchair, or a motorized scooter and be able to see where I’m going, hahaha! We all have to take this day by day and sometimes minute by minute but we all know one thing, and that is; progressive does mean that we will progress. We will change in ways that we didn’t expect, going downhill and certainly not up. All we can do is expect those changes and go with the flow and roll with the punches, because with this disease, we don’t have a choice.

    • r. cohen August 27, 2015 at 8:18 am #

      Sewe where you areg oing? If only…

      R.

      • Sandy Stolaronek August 29, 2015 at 6:19 pm #

        Richard, I’m not sure that I’ll even live long enough to lose my eyesight but if that happens, I think I’ll get a horn on my scooter, just to make sure nobody gets run over, LOL!

  12. Amy Corcoran-Hunt August 26, 2015 at 6:56 pm #

    I have nothing nice to say about progressive neurological disease. But you’re right of course, life goes on.

  13. Kat August 27, 2015 at 10:03 am #

    Personally, I find denial and distraction to be the best way to keep moving forward. Even though I keep physically moving backwards. As you all know, people with progressive disease are the strongest. Although, I’d be happy to be weaker and be able to walk. Although that makes no sense!

    • r. cohen August 29, 2015 at 1:27 pm #

      It does.

      R.

  14. Yvonne August 27, 2015 at 1:54 pm #

    Makes perfect sense Kat. 🙂

    • Jan1 August 27, 2015 at 11:57 pm #

      Makes sense to me, too. (And thanks for the chuckle).

  15. michael August 27, 2015 at 6:44 pm #

    I remain in awe of the courage displayed here. Suffering in silence helps nobody. Thank you all.

  16. Yvonne August 29, 2015 at 3:12 pm #

    Just read your tweet and it says volumes in those few characters. “Dignity matters. More to protect than our bodies” That’s my biggest fear. I bargain with it everyday. Let the insidious MS monster take my eyesight, my memory, my recall, even most of my mobility but leave me my dignity. Please…

  17. Mike Jortner August 31, 2015 at 10:45 pm #

    Adapt or die. If anyone can figure a way out of the maze, it’s you Mr Cohen. You are a rock star to us and we all have faith in you. MS is a death from a million cuts. Little pieces break off until what’s left all crumbles. We all are losing sh*t everyday whether it’s eye sight, mobility, cognition hell what I wouldn’t give to go to the bathroom like people were designed to. Instead of using tubes like some sci-fi creature. I’m gonna be 40 in a few weeks and it will be almost as long with MS than without. A million cuts, I think I’m at 850,000. I know I should have a better attitude but why it’s my disease and nowhere does it say I have to be cordial to it, it certainly hasn’t gone easy on me. So the next thing I lose or can’t do anymore, I’ll just toss MS the bird and adapt. By the way, best wishes Mr Cohen for a speedy solution to your current crisis. You are one of a kind.