What’s up, Doc?

I think we are wading through thick, gooey mud, stuck on what we believe other people think of our physical realities and how they relate to us. Or do not. I for one want to find my way back to dry land. I have asked, who cares? Obviously, a lot of you. I would tell you to get a life, but I started the food fight, so I guess my options for positioning myself above the fray are limited.
If it is fair to label this an obsession, I wonder why this seems so important to so many. I cannot abide amateur shrinks, but here I go. I will begin with the guy in the mirror. Maybe I am so uncomfortable with if not alienated from my body and view of myself that I project it on others. I see myself as flawed and physically weak. Those observation ns are grounded in reality. I move awkwardly, hobbling on a cane, though I am not in a wheelchair, at least yet.
I am certain many of you can outdo me on physical limitations. Are we judging ourselves harshly and taking what we think of ourselves and attributing it to others?
I know I think less of myself because of my illness. I know I apologize profusely to all who are around me when I fall in New York. What is that all about? I certainly can be a misanthrope, perhaps defensively. I wonder if any of you can relate to this. Maybe carrying those chips around on our shoulders is making us tired of playing a game that can injure a brain as much as football.
There will be no charge for this session.

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Again, Who Cares?

Good reaction to, But You Look so Good. Clearly a potent subject. We seem to return to it from time to time. Maybe demyelination creates raw nerves. I wrote that I have stopped caring what people think or say. I do not think that is where most of you are right now.
Johanna asked a simple question. How should a healthy person greet/talk to a person with MS, and he/she knows the person has MS? Omit any reference to health and/or appearance? A simple question can have a complicated answer, certainly one that not all will get behind.
How about normally? Why would anybody feel compelled to bring health or illness into a greeting or casual conversation? I, for one, don’t need to be reminded of my health problems. If we are talking about a conversation with a real friend, presumably we know each other well enough to put the rule book away. Both of us can trust our instincts.
In a casual conversation, how about nothing? How are you? is among the most insincere questions in the language. Want to shock somebody? Tell the truth. That should shut him or her up for a while. Walking on egg shells must be tiring. When strangers ask me inappropriate questions about my limp or whatever, I shrug and say, bad leg. That seems to be enough, since they really do not want to know, anyway.
Maybe this is much ado about very little. I dropped the chip from my shoulder a while back. I hope we can stop driving ourselves crazy with concern. Who cares? I guess I have asked that already.

56

Hope in Spring

A thought for a lovely Spring weekend.

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Emily Dickinson

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But You Look so Good

Somebody actually said that to me the other day. It had been years. What did you expect, I silently asked, a cadaver? People mean well, but what they actually are saying is, you cannot possibly be sick. Please don’t be sick. That makes me uncomfortable. Our long ago Irish babysitter over heard someone say that to me once. She suggested I reply, “It’s not me face that is sick, stupid.” I told her that others would misunderstand and believe I am kidding.
This time, I have a different thought. I do not care anymore. We have gone back and forth, comparing notes on how insensitive or rude others can be. I just do not care. Really. I have spent too much psychic energy and time reacting to others. Who cares what they say? We never are going to win that one, anyway.
Walking or riding around in an agitated states lets them win. Ignoring those who do not get it or care to strikes me as a much more reasoned way to live. I would rather save my anger for others, those who fail me big time. The New York Yankees, for example, or the guy at the local liquor store who routinely runs out of Bombay Sapphire. For them, forgiveness does not come easy.
I was even going to stop paying heed to the chronically healthy, but I enjoy baiting my physician friend who never tires of reacting to the term.

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Staying Up

And I do not mean staying awake. When we know we are slipping, as life’s little tasks grow difficult, inevitably we have to admit in a whisper that something bad is happening. I am so invested in my positive attitude, so caught up in the stem cell trial; I cannot bear to admit to myself that I am slipping. But I am weak, walking like nobody I know. Admitting a setback possibly but historically unlikely to be temporary, is a statement of failure and just is unacceptable. Please, no.
Why would I think I can declare victory before the race is run? This is a marathon, not a sprint. Oddly, I think I know what is happening but seem powerless to steer clear of the choppy waters. My two battles with colon cancer have left me with imperfect plumbing. Cancer and MS do not coexist well. Cancer and aging do not dance gracefully. Greater detail is too much information. And what is the predictable result of my anatomical shortcomings?
Stress. Big time. All of us understand the dangers of stress. I know that stress elevates my body temperature and problems kick in. I also know that my losses likely are permanent. That does not promise a rosy future. I always have outrun the opposition, outsmarted my enemy. This time feels different. I am worried but not ready to concede.
Where do we get the strength to stay up and keep going? We are emotional alchemists, spinning straw into gold. We just do it. I do it. We tell each other and convince ourselves that the show must go on. I know my kids understand that is how I feel. And they absolutely realize there can be no victims in this house. But when the lights are out and all are safe in their beds, wherever they are, who knows what fills a heart?

38

Numbers

I want to share some numbers. I never did any research about how the blog is doing, in no small part because I did not have a clue how to go about it. When others suggested I really ought to know, I did what I always do. I called Brooke. She did not know about how to go about the task either, but at least she was smart enough to find out.
Brooke went to Google Analytics, which turns out to be a free service. Imagine that. This is what we learned. For the week ending April 5, we had more than seven thousand page visits, 7, 152 to be precise. That means about 30 thousand for the month. I am not certain how to put that into perspective but am told that is an impressive figure for a relatively new blog.
I have posted 130 blog entries and you guys have contributed mightily. I believe we have built a good site. I expect we will hear no thunderous applause, nor will I be checking the mail for bonus checks. Maybe we should merely take the small satisfaction in believing we are doing good and touching people in need.

49

My Achilles Heal

My back is killing me. I sound like a guy in his mid-sixties who has seen better days and wants you to know. I used to haul camera equipment up hills, race through war zones in search of safety. Then, gradually I lost the ability move quickly or just stand straight before a mirror and shave. My back is giving out on me. The muscles feel weak, as if I am about to lean forward and fold in half.
Is there one part of your body, a single joint or muscle that feels weak enough to bring the entire structure down? I keep thinking about that camel that agreed to carry one last thin reed of straw. Probably, he still is in some veterinary hospital wishing he had remembered to buy insurance.
I had a disc problem in my lumbar spine, maybe the result of the contorted way I carry myself. I had a lumbar fusion and was assured I would be whole again. Not. The stress of the surgery kicked in the MS. Now I stand at the sink, struggling to stand straight as I brush my teeth or shave. My torso begins to fold like a napkin. I finish the job sitting on the closed toilet cover.
It is not my legs that limit my walking to only a few city blocks. Again it is my back.
I am not crying in my beer. I know that many have it much worse than I. I try to strengthen my core. Physical therapy is tough. I see small changes but nothing to write home to mother about. She is 93 and would tell me to stop kvetching anyway. And I will now.
But does any of this sound familiar, an Achilles heal that will not heal and is nowhere near your foot?

36

Clarification

May I clarify one point? I am regularly chastised by a doctor friend for demonizing the chronically healthy. I see it as a catchy phrase, referring to those around us who are blessed with good health and move around, eyes straight ahead. They do not see us. We are not on their radar screens. There is nothing new here. They are not bad people, and I want nothing from them. OK?
A smile and door held open would suffice.
I, for one, want my private battles to remain private. I like it that way. I feel hesitant to overburden loved ones, but there is a larger point. I inhabit my own world. I keep lines of communication open but share only to a point. I am not hiding a secret life, only holding thoughts and perceptions close to the vest.
Each day I go out is a journey. New obstacles abound. I deal with them. No big deal. I do not talk much about them. They are boring. I wrote that there are no bad guys here. Why do some protest too much? I am comfortable in my skin. I wish others felt that same comfort and stopped focusing on the term, chronically healthy. It does not translate to war criminal.

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Private Battles

This from Richatk8: “thank you Richard and all for sharing your thoughts and feelings. You are helping me begin to understand my wife’s journey. The more I know about the private battles you all face, the better I will be as a partner.” A nice thought. I believe it is the private battles that define the disease experience for the many. We all know about numbness. We push our way through foot drop and debilitating fatigue. Those are universal, sad realities.
The private battles are out of sight. The loss of independence, diminished self- confidence and shattered self-esteem are all too familiar. Making it in an unkind market place and finding our footing in the world of relationships take their toll. Such are the unseen skirmishes, the private battles with chronic conditions. But we cannot go public because the chronically healthy do not want to hear or know. Our popular culture jettisons us out into the street. Nameless others are not mean spirited or vindictive. They simply have no time for us. That is a fact of life in 2015. We are on our own. Surprised?
Yes, our private battles are large. In the end, they will define us, at least to ourselves. We are the only ones paying attention, anyway, the sum total of who cares. We are our own keepers. Do not look to government for help or by extension, to friends and neighbors. Illness is a solitary experience. There is nothing others can do, anyway. There are no bad guys here. No one is gunning for us. Private battles must be fought privately. Any war is with our own spirits and resilience. Those are gifts to ourselves.

55

All in our Heads

We have sounded a group lament over shared physical limitations. That is a powerful and highly emotional subject to visit. And maybe we are not just visiting. Many of us seem to live there. We cannot let go of what was and is no more. Absent any context, I want to share the words of an old and wise friend. The thought was offered years ago in a simple declarative sentence at a time of loss.
“Who you are is in your head.”
Think about it. Our identities are an amalgam of our thoughts, beliefs and values. The ability to ride a bicycle, to jog on a path and climb two steps at a time only are side shows. We focus on life’s small successes and make more of them then than is warranted. I have not driven a car in many decades, in fact, only was able to drive for twelve years. It took twice the time to adjust to that particular limitation. Sometimes I believe that task never will be completed.
Why?
Is turning a steering wheel and pushing a pedal to the metal an accomplishment that matters? Do I envision a headstone that reads, He Drove a Car? Navigating the highways we travel on our long journeys strikes me as having more meaning. I, for one, have made a habit of mixing up what matters with what is symbolic and, at the same time, highly trivial. Maybe we think with our emotions too much.

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