Tuesday, January 31, 2012

She's sleeping now

Douglas Winslow Cooper

I just looked in on my wife Tina as I often do during the day. It’s shortly after noon, and she is asleep. Her breathing is regular, with the help of her ventilator. The baby monitor brings its reassuring sound to the kitchen where I am preparing her food and medications.

The good news is that she is resting peacefully, unaware for a brief time of the limitations her quadriplegia has imposed upon her. Slowly, very slowly, neurological repair is occurring while she rests. Where there is life, there is hope that someday her life will be enhanced by a medical breakthrough for multiple sclerosis. Meanwhile, we make the best of our half-full glasses of life.

The bad news is that this is yet another period when Tina and I cannot communicate. At times, both her thinking and mine are clear, and we can talk as we once did, understanding each other as few, if any, others can. We can have conversations rivaling those we had when we first fell in love at Cornell University in 1963, almost 50 years ago. She quickly grasps my meanings, laughs easily at my puns, speaks carefully so as not to hurt any feelings.

She was Tina Han Su before marriage: Her given middle name, Han, means “reserved,” as in “quiet.” Still waters run deep, and she can be profound. At other times, MS has stolen some of that mental acuity, and our interchanges are less satisfying. Fortunately, mercifully, she rarely seems aware of these cognitive losses so common to those with advanced cases of MS such as hers.

The phone rings, and I hustle to get it before Tina wakes up. Sleep is good for her, but I miss her when she is asleep. Still, Tina’s sleep is a mixed blessing—it’s a time to catch up on other things that need attention, like writing this perspective to share with you. I’ll tell her about it when she wakes. She’s sleeping now.

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.

47 comments:

  1. That was very moving, thank you for sharing.

    God Bless
    x

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    1. Tina is so lucky to have you as a husband. I am also blessed with a wonderful and amazing husband who takes great care of me. Thank you for sharing, now I am going to go wipe my tears!

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    2. Karen,
      Thank you. It is one of the few pieces I have written that makes me sad, and it is one of my best. Perhaps it comes closest to the truth. Then again, maybe not!
      Doug

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    3. Lee,
      When marriage works, it is great. Very good to hear others tell of their own successes. Our memoir's themes are the power of love and the value of life. Tears have their purposes, too.
      Doug

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  2. I have someone I love very much that has ms.....I thank you for this blog, makes me sad to know with her what she is going threw is just the beginimg. Your a great man

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  3. I have someone I love very much that has ms.....I thank you for this blog, makes me sad to know with her what she is going threw is just the beginimg. Your a great man

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    1. Jamie,
      Prospects for your beloved are better than they were decades ago. No true cure yet, but some ways of slowing progression. Good to juggle three thoughts: today is precious; enjoy it; the future is uncertain. Thank you for the compliment. I am married to a great woman, my heroine.
      Doug

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  4. This reminds me of my Dad, who took such tender care of my Mom after she had a stroke. I have MS and take comfort in knowing that my husband will also be by my side if/when the disease progresses to this point. God's blessings to you both.

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    1. Thank you. These challenges happen to the couple as a team and are best faced that way. To be the cared-for partner requires heroic strength and patience, and to be the caring-for partner is to have the opportunity, like-wise, to be heroic.

      May God bless us all.

      Doug

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  5. I have the same situation. This gives me courage to continue and endure. God bless. Thanks for sharing this with us.

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    1. You are very welcome. Keep on keeping on! It is a labor of love.
      Doug

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  6. Mr Douglas Winslow Cooper, I have read about the illness of your wife and I see how much yo love her, I see she is in bad health condition, and as well as I see that therapy and medication have not stop the MS disease,what is affecting her, take her body energy and make damage to her mucles and nervous system,and stop her ability for walk, from 10 healthy to 1 close to lost her life, she is between 4 and 3, she has low power to fight with her illness, medication are helping her, without madication she does not will loo Ok. I want to explain a little about me, I am from other country, south America Ecuador, I lived in Galapagos 20 year, I know the Nature like no body know, I know the Environment in USA better than no body, I understant about polution and how affect people in home, IT will be dificul to belive but I am the only one understant what is wrong with MS.and some else. I follow the illness by 8 years, and I know how work. I am a regular person that is living in NYC, but thanks good he give me the power to understant special thing about the illness and how to help people to get health again. From 10 to 1, From my point of view Gradually she can go up to 7 or if we are lucky she can go up 9, and she will get one against the posibility to walk, I do not how much body damge made the illness, but I belive that with the help of me,regular medication and a good body therapy she can walk agains. Every body is waiting for a eclat from Scientist, or Scientific lab to made a medication myracle, but no one will stop the illness, there is same else and I am the key for the myracle, If you see that medication and Drs are confused with MS and they do not understant how to fix it, so I will be happy to work close to you to prouf my theory and solution about Multiple Scloriosis. I do not write good English, I do not speak good English, I am not Dr but that does mot means that I have a special knowlogy about disease. I do not have much information about me in FB page, I am not good with the computer, if you want and you are interesting in my case to help your wife contact to me by my FB page or my Telf # 2128449180 Miguel Pazmino. The best way for me is speaking directly persone to persone, I am living in Queen_NY

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    1. This comment has been removed by the author.

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    2. Miguel,

      Thank you for your generous offer. Tina's condition is stable now, and I am very reluctant to try anything new, especially anything not confirmed by successful double-blind clinical trials. Even Betaseron, tested that way, turned out to lower her white blood cell count dangerously, and we had to stop.

      If your idea is eventually confirmed, you will receive the appreciation of many. Until then, we will have to decline.

      Doug

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    3. Mr doug winslow cooper, Ok, I accept your decline,and Thanks GOD your wife is stable, but if you change of means I will keep open my door, have a good week Miguel-NYC

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    4. I do not Mr Even Beterson, but i see he did a big mistake, how he as intended to lower the white cell in a sick body, the body make white cell as a auto defens to the illness, medication can lower the white cell but that is not going to fix the health problem and the illness persone was in risk,the red cells are important for the body but becouse It is sick make white cell, that It was not a good point. I understant the body was out balance we can not force body nature to the auto defens, we do not have to fix inside her body, we have to fix outside her habitat. Sorry by the drawback, It is my last foodnote, I say what I feel inside me. Thanks

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  7. You are a true blessing...I am inspired by your love for your wife. Thank you for being the type of spouse that all MS'ers deserve.

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    1. Kimberly,

      Thank you. We hoped that our book, Ting and I: A Memoir, would be inspiring and encouraging. To life! To love!

      Doug

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  8. bless your heart.... and may your wife continue to be comforted by such a wonderful man.

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  9. I believe that your wife is really lucky to have a husband like you! One of the reasons I am still single is That I still can't take risks as I am not sure i would be as blessed as your wife is. I am really moved by your faithfullness and devotion to care for your wife during all these long years! Sincere congratulations for you and best wishes for your family!

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    1. Your point is well taken. While a good marriage is likely to be better than being single, a bad marriage is almost certainly worse. You do want someone who will commit to facing all that comes, "for better or for worse, in sickness and in health." I hope you will find someone worthy of accompanying you on the "adventure" of marriage and MS.
      Doug

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    2. A bad marriage is worse. My husband left me when I started having trouble walking. I'm better without him - I've found wonderful friends to help when I need help, and to love when I need to share love.

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  10. It is sensitive and supportive partners like you and my husband that keep those of us with MS going, both in the good times and the bad.

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    1. Our partners with MS keep us going, too. We like to say that we are like a binary star system, revolving around a common center.
      Thank you.

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  11. Replies
    1. When I read it, I do get a bit sad, but being touched by Tina's tragic loss is sometimes appropriate. Then one gets back up and keeps on, lucky to be alive, lucky we are together.

      I have not read it to Tina, perhaps the only piece I have written that I have not read to her. I do not want her to be quite so aware of our mutual losses.

      When you fall deeply in love, you are changed forever, and some day you will cry, but one must be willing to risk it.
      Doug

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  12. It is obvious how deeply you love your wife. My wish for you and Tina is that to two of you are blessed with many more days when the two of you can communicate {in sync} as you described. What you write about being deeply in love is so true ~ it's worth the risk. The reward is a partnership with an individual such as yourself.

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    1. Your wish for us is our wish too. Thank you. Every day together is a blessing ... and a miracle.

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  13. Doug,

    I really appreciae you taking the time to reply to every single comment including mine! That's really very nice of you!!

    I know that it's a challenge to find such a partner who is determined and willing to face life with you together as one person! But i'll certainly keep trying and will never give up. Here in my country Morocco, the problem sometimes is beyond the girl herself, it concerns her family as well. I had been with a girl in the past. We loved each other and she was very happy to be with me but her parents refused me and we couldn't do anything about it... The cultural aspect overcame our determination...

    Again, I believe that having a partner like you is a guift and a blessing from God! All the best wishes for you and Tina and the whole family!!!

    Hamid

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    1. Hamid, yes, the influence of the families can be overwhelming. Tina and I did not marry for twenty years because, in part, of the initial objectons of our parents. You do not want to hurt your beloved's relationship with her family, so it puts both of you in a difficult situation, but one that might change in time. I hope so. If not, you will love her, but be separated. Helen Keller wrote that what we love deeply changes us forever.

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  14. Lee and KUB,

    I am glad to learn that both of you have similar wonderful caring partners just like Tina is!! It obviously makes me feel more positive. It's a proof that there is always a bright side to look at even when one is suffering...

    Sorry if my English is not well understood, it's not my first nor second language

    Hamid

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  15. Doug,

    Such beautiful and heartfelt words that portray your deep love for Tina. Tina is fortunate to have you as I am to have my beloved husband. We are journeying on a similar path as yours. I was diagnosed with MS 18 1/2 years ago and have used a power wheelchair for the past 17 years with no use of my legs and limited use of my right arm and ventilator dependent 24/7 for the past 13 years. Despite the limitations that MS has imposed and with the love and support of a wonderful husband, family, and friends I live life to the fullest and am grateful for each and every day.

    Cherish each and every moment with Tina, as you seem to be doing, and hold tight the many memories of your years together. My thoughts and prayers are with you both. May you find the strength and courage that you need to get through each day. I have your book on my wish list and look forward to getting it so that I can read more of your beautiful life together with Tina.

    Brenda

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    1. Brenda,

      Your story seems inspiring, too. I'll bet there is a good book in there! There are real similarities between your situation and Tina's, and I hope both of you continue to thrive despite the limitations. I will be happy to email a free pdf of the nearly final version [galley proof] to any who request it from douglas@tingandi.com, though the printed book is even better.

      Doug Cooper

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    2. Doug,

      Thank you for your kindness and thoughtfulness. You and Tina will be in my daily thoughts and prayers.

      Brenda

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  16. Wow, beautiful and moving.
    I am living with MS and have been a divorced single mother for the last 14 years. The love and battles you have endured together with your wife give me great pause. I am dating a sweet heart of a man that even though he says he knows what MS is, I really wonder if he does because he hasn't seen it with me... yet.
    I have mild MS, for now. It may always be that way for me or not. I will have to see won't I but I don't know if it is right for me to ask it of him. At the same time, I hope that I would have someone loving me still if I get to where your wife is now. So I am torn.
    Maybe we are better people for loving another still through all the trials and tribulations that life throws our way.
    Thanks you for sharing your love with us.
    Joyce

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    1. Joyce,

      Thank you for compliments.

      It was very important to me that Tina was open about her MS before I married her. I read how serious it could be and decided I could and would handle it, decided in fact that I could not bear to think of her going through it without me. If you can get, and trust, that kind of commitment, marry him!

      Tina has made this "adventure" more manageable by being cheerful, thankful, and loving, our heroine. The situation gives one the challenge / opportunity to have a very special relationship, a rare life together, though certainly not a conventional one.

      Doug

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    2. I was touched by your story. Personally, I have had MS for 35 years, diagnosed for 30 and I'm married to a wonderful man too, although not quite so understanding of my situation as you seem to be about Tina's. All I can say is MS takes a terrible toll on both the patient and those around him/her and I wish you both the best.

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  17. Doug,

    With a disease that takes so much away physically and mentally it is nice to know there are others where their personal relationships don't change and even get better! I met my husband Labor Day weekend in 1999 and 4 days later I was diagnosed with MS. We have been married now for almost 11 years.

    He is not only my husband but my caregiver...my companion and my friend.
    Just as you are to your wife.

    It is so easy for relationships to part and so easy for someone to walk away but you didn't do that just as my husband didn't do that. From someone who appreciates that more than we can express at times, due to the MS, Thank You for being the man that you are!!

    Your wife is very blessed to have you in her life and even thou she may not be able to express it in words at times, I am sure she knows how blessed and lucky to she is to have your love and compassion for her.

    Everyday brings a new "normal" for anyone whose life is changed by MS. We always look at each day as something new to "look forward to"...never a dull moment of any day. :)

    Here's to H.O.P.E. ....Having Our Pain Erased

    God Bless
    Gayle

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    1. Dear Gayle,

      Congratulations and best wishes to you and your husband. When a marriage works well, especially in difficult circumstances, both partners are to be commended ... though living well is its own reward.

      Warmly,
      Doug and Tina Cooper

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  18. Hi Everybody again,

    Whenever I visit this page, i leave feeling more posetive and cheerful after reading your comments here. It really is very moving to read that many of you here have their partners' support and care... Hoping the best for you all and praying that i be as much lucky and blessed as you are!!

    Best wishes!

    Hamid from Morocco

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    1. Hamid,

      Thank you for your praise of all of those who have written in response to this piece. It is certainly uplifting to read about the loving and supportive relationships that many have succeeded in establishing and that othrs can reasonably hope to have. We hope that you can find like-minded people near where you live.

      We wish you all the best, too.

      Doug and Tina Cooper

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  19. Doug,

    You have touched my heart today, and I needed that. Thank you for being there for your wife, as my husband is there for me. I am ambulatory and walk with very little aid, but I have been in a "chair" and got out of it because of people like you and my Ronnie.

    God Bless you!!1

    Debbie from Gettysburg, PA

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  20. Doug,

    You have touched my heart today, and I needed that. Thank you for being there for your wife, as my husband is there for me. I am ambulatory and walk with very little aid, but I have been in a "chair" and got out of it because of people like you and my Ronnie.

    God Bless you!!1

    Debbie from Gettysburg, PA

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  21. This touched me greatly. I have MS and was diagnosed in December of 2008. I am incredibly blessed that my husband who was my fiance at the time stoode by me and continues to do so. To read your loving words towards your wife gives me such hope for us. I am glad that your wife and you have each other.
    -Sarah from Greenville, SC

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  22. Doug, You sound like a wonderful loving and caring husband which is great. I truly feel for your wife with the her ongoing struggle with MS. I was diagnosed with MS in 1981. Fortunately for me my MS symptoms are in no comparison to your wife's. I wanted to pass along this info thought you might want to check it out. I started taking Virapress January 3, 2012. I've had improvements with my balance, hand writing, energy level has improved, very, very seldom do I feel the hug/girdle effect, regular and normal consistency with stools. I've not had any bad side effects, on the other hand my eye lashes are thickening, strong nail growth, and better complexion. I've always felt that the medication for MS would give me worse side effects versus helping so I've never been on any medication for MS other than Benadryl for itching. There have been cases where a person was in a wheel chair and after taking Virapress they can now walk. This is not spam or gimmick. Check out out for yourself, I'm glad I did. Praying for the best for you and your wife. God Bless
    Marian from Rineyville, KY

    http://www.virapress.com/

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  23. I was very touched by your wonderful loving and caring relationship you and your wife share. I was diagnosed with MS in 1981. Fortunately my MS symptoms are in no comparison to your wife's. I want to pass along this info thought you might want to check it out. I started taking Virapress January 3, 2012. I've had improvements with my balance, hand writing, energy level has improved, very, very seldom do I feel the hug/girdle effect, regular and normal consistency with stools. I've not had any bad side effects, on the other hand my eye lashes are thickening, strong nail growth, and better complexion. I've always felt that the medication for MS would give me worse side effects versus helping so I've never been on any medication for MS other than Benadryl for itching. There have been cases where a person was in a wheel chair for years and after taking Virapress they can now walk. This is not spam or gimmick. Please check this out for yourself, I'm glad I did.

    http://www.virapress.com/

    God Bless
    Marian from Kentucky

    ReplyDelete