Tuesday, March 13, 2012

Connecting

Douglas Winslow Cooper

My wife Tina and I have wondered, from time to time, why we do not have more friends. Both of us were popular in school, but now the number of our acquaintances is small, and friends are fewer still. Some of this is due to Tina’s multiple sclerosis, which has left her bedridden for 18 years, quadriplegic and ventilator-dependent for the past eight.

Getting out and about is difficult. Serious travel is almost impossible, limiting the distance we can go to meet friends and family. They can visit us, but all are aware of Tina’s special needs and are careful, perhaps unnecessarily, not to interfere with our daily medical routine.

When we do enter the “outside world,” some people react warmly and considerately, while others are clearly uncomfortable, assuming they have little in common with us or fearing they might offend, even with well-meant words. It’s easier for them to look away or remain silent. Sometimes, I can make a joke that helps them feel more at ease, “putting the humor back into quadriplegia.” And once we get talking, these strangers sometimes tell us of friends or relatives with MS or similar conditions. They tend to remain strangers, though, and I cannot think of one whom we met casually who then followed up to get to know us better. Fortunately, neither Tina nor I mind such loss greatly.

Not all of this disconnection is due to MS. Decades ago, Vance Packard described America as A Nation of Strangers, who have little time for, and little in common with, each other. Today, loneliness is said to be endemic among today’s elderly. “Old age is not for sissies.”

Tina and I do connect with our nurses. We did connect with people in our MS support group, a group that became too far apart and, in fact, is no longer functioning. Even in such groups, the specter of being paraplegic or quadriplegic can make the newly diagnosed ill at ease with those whose MS has progressed.

Concern for Tina’s health may have made our immediate family members more connected with us than they would have been otherwise. Hard to say.

Tina and I have been in love for nearly a half century, married now for over 27 years. When I gave a talk recently about my book, Ting and I: A Memoir of Love, Courage and Devotion, an attendee asked me afterward for the secrets of a happy marriage under such conditions. Briefly at a loss for words, I realized what had worked for us: “Marry someone who deserves your devotion … and don’t fuss over little things.” MS puts much else into perspective.

Give What You Know at MSconnection.org


Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon, Barnes and Noble, or their website, tingandi.com.

16 comments:

  1. While I cannot share your burden [of love and kindness] My girl friend of 7 years [we were both married before] has suffered from MS for 21 years.She raised 3 children, worked to support the family, and it strong as anyone-when she is not having a flare. I cannot imagine her in your wife's condition. Indeed it is hard to have close friends when you have a spouse/companion that is afflicted with any progressive problem. We too have the same issue. I am hesitant to arrange travel, visits or trips anywhere without making prior arrangements. Wow! Continued good wishes

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    1. John, Thanks for reading mine, writing yours, and giving us your good wishes. You and your partner each deserve commendation. Our best friends come to understand. The others drop off. Cherish the loyal remnant! This special situation is an opportunity for both of you to lead special lives, lives out of the ordinary, containing not a little heroism. Our best wishes, too.

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  2. wow...amazing love...I wish I knew back then what I know now about my depression being part of MS...I may not be divorced...thank you for your story. Not looking so forward to the pain I have ahead, but it's encouraging to know that I can get through it. Thank you.

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    1. Yes, the cognitive and psychological impacts of MS are a touchy subject, as we do not want those afflicted to be viewed as deficient, yet there are times when they simply cannot perform at their former levels. We have to take it easy on ourselves and each other, viewing MS as happening to the united couple rather than to only one member. Tina [Ting] and I had it easier than most, going into our marriage {second for both] knowing we might be faced with such devastating losses and willing to face them.

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  3. You are giving me hope for my husband and I! I was diagnosed at the age of 32 which was 12 ago when my youngest son was a year and a half old. It's been a VERY long hard road but we are trying to stay together. I use a walker but it's looking more and more like I will have to be in a chair soon. He gets upset when we talk about it. He doesn't want to accept that the disease is progressing. We too have lost "friends" due to the disease but I feel that if they were real friends they would have stayed around. Many blessings to you and Mrs. Tina!!!

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    1. Dear Susieque, It is hard to draw the line between a beneficial optimism and destructive denial. The adage is to "hope for the best and prepare for the worst," and it makes some sense. Save more money than you might otherwise. Choose fewer amd less challenging situations, while still having some. We chose not to have another child, for example, as MS deficits became more pronounced. Tina chugged along with a walker bravely, but finally stopped to ensure her safely. It was time to get a chair. You will be proud of your perseverance, and later proud of your wisdom in making the necessary changes. We wish you the very best. Prayer has helped us and some others, too.

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  4. Thank you Douglas for sharing your story. Your love and devoting are truly remarkable. My husband and I have lived with MS since 1984. Yes some of the connections are broken, but we have beautiful new ones also. Keep the faith and give Tina our best!

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    1. We, too, have coped since 1984. Congratulations! In a couple of years, maybe we will be getting Thirty Year Pins. Joking aside, enduring is one form of overcoming, and you and your husband deserve credit for doing so. Glad you enjoyed our story. I've written a couple more that will be blogged later this year. Readers are welcome to write us at douglas@tingandi.com.

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  5. My husband and I will be married seven years next month. We have two beautiful girls ages three years old and three months old.He was diagnose when he was 19. It sometimes heart breaking for me esp when he loses his balance. He uses a walker to get around and has the best attitude and biggest heart. I am lucky to be loved by him. Your story is truly inspirational. Whatever comes our way we will face it together.

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  6. I've noticed that my husband I are kind of secluded. The thing is I just might like it.

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    1. Understood. We like the relative isolation of our country house but still miss our friends. When one gets away from it all, that unfortunately includes people you would like to see. A strong marriage is key to surviving the MS monster, so if the two of you are content with what Tina and I call our "binary star system," revolving about each other, that's good. If MS progresses to quadriplegia, though, you will likely need a lot of help. We have.

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  8. I am happy that you have that special bond with Tina. It is a tough road, but she is lucky to have you. As a newly diagnosed patient (June 2011), my symptoms are more internal at this stage. When I say I am forgetful or have slurred speech, many say "Oh, I get that too" as if it is no big deal. It really aggravates me to think that most do not have any idea what people with MS experience. It is hard to see yourself going down a slope of declining health. I am optimistic and happy that I have my kids and husband by my side. Family is all that you need to help you overcome the obstacles, but I guess you and Tina have already figured that out. I will keep you in my prayers!

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  9. My beautiful wife and I have also been married 27 years this summer. We just became empty nesters and when I was officially diagnosed last year, it was her love, devotion, and caring that got me off the couch feeling sorry for myself and biking with her as she learns to run a 1/2 marathon. For me, it's all about managing.... We have always been very active and connected with several groups of people at church, work, kids school etc. My wife took me to Rome last December and although I couldn't keep up as well as everyone else, we found ways for me to be active and really enjoy the trip. I don't know how long I will be able to continue to be around people and activities, but I am going to try and enjoy every second of it while I can !

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