Hello-- I'm an adoptive mother of two, a boy (5) with DMD, and a girl (2) with normal health.  My boy was diagnosed about 3 months ago.

 

I was raised in the Christian tradition but am now a Unitarian.  When I was struggling with the diagnosis, I realized that the thing that really felt crippling was the overwhelming fear. (many fears! not just one.) The bible verse that floated to mind, and that gave me great comfort, was "There is no fear in love; but perfect love casts out fear."

 

Later, I talked to a colleague about my son's diagnosis, and it turned out her husband had been diagnosed with bladder cancer about 6 months ago, and she'd found the Pema Chodron book, Comfortable with Uncertainty, to be a big help.

 

I have started reading this book and have found it a tremendous comfort.  The idea is to live in the moment, to acknowledge your fear and make friends with yourself.  The underlying concept is compassion: to all living beings, and to yourself.  And the funny thing is, it basically restates that Bible verse that gave me such comfort, but then expounds on it and helps you work with your mind to free yourself from painful habits of thought.

 

Is there anybody out there that would like to talk about Buddhist thought and how it applies to coping with DMD?  Thanks for listening...         --Ruth Griffith ("MyungHoon omma")

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Andrea, thanks so much for writing.  And thanks for telling me about Unfettered Mind and Ken McLeod-- I will definitely check that out.  I also take Buddhism as a philosophy right now, not so much as a religious belief.  It has helped me so much.  You're right-- it's the loving kindness work that brings such healing.  The guilt is awful-- and I'm an adoptive mother, so what is that about?  It doesn't matter whether the kid was adopted or biological, guilt is just a mother thing, I guess.  My husband just sort of shut down after the dx, and our relationship hasn't been quite the same, but lately he has started to reemerge and find his joy and sense of humor again.  He's tried listening to Pema too and said it's helped.

Thanks for letting me know about your experiences.  I haven't tried meditation yet but since you said that helped, it makes me more inclined to do it.  I guess I don't really know how to do it!  But our library system has a lot of Pema's audiobooks, so I can probably get one that guides the listener through.

Thank you, Andrea, and bless you--          --RUth


 
Andrea Cleary said:

Hi Ruth,

Like you, I am a mother of 2, Simon with DMD dx'd at 6, and William healthy. Like you, I was struggling to find some comfort. I immediately felt connected with Pema Chodron when I heard that in her book "When Things Fall Apart", she described how her husband came home one day and said he wanted a divorce and had been having an affair. Pema either picked up a rock or threw her tea cup at him. I had thrown something at my husband one night at supper not long after Simon's dx because I felt he was blaming me for the disease. Then I was feeling so guilty because of what I had done. I was a mess. But once I heard about Pema Chodron's book and started to read other Buddhist stuff, I realized I had found my solace in loving kindness. I started to meditate, mostly as a relaxation method truthfully, not as a Buddhist. And there are so many readings and terms that I just don't have time for, but the Buddhist philosophy has really gained my respect.

Perhaps you have also heard of Ken McLeod and his book Wake Up to Your Life? There is a connected web site/cummunity called Unfettered Mind, which I am a member and you might enjoy for asking questions.

Take care Ruth.

Andrea

Andrea, it is so good to get your emails.  Sorry it took me so long to write again.  I kind of got dragged in the undertow.

 

It is interesting how the marriage relationship problems that arise from the dx are worse to deal with sometimes than the child's medical condition.  I have had many times since the dx when I thought, "why did I marry this man?".  My husband also has trouble dealing with emotions.  His retreat is screen time: tv and esp. computer.  He could spend his life on gaming websites.  He already struggles with obesity and high blood pressure but his compulsion to escape reality is so strong.  He runs from any negative feelings (they're no fun, I admit, but if you can at least name them to yourself, that's half the battle--I've found just stopping and sort of objectively saying, inside "right now what I feel is anger and it's because of x, y and z", well, that really de escalates that emotion).  Anyhow, it's been good to listen to Pema Chodron because she's helping me feel more compassion for my poor husband. 

I'm going to my first visit with a shrink next week.  Not really my first ever, but the first since the dx.  One thing about being the mother of a DMD is that if you talk to people about it, then they feel anxious and want to say something to comfort and cheer you, and then I feel like I've got to reassure them that it's all okay and try to make them feel better.  I feel like I have to lie and say everything's fine, really.  The beauty of seeing a psychiatrist is just letting them see every  rotten thing going on in my life, and not holding back.  There's really nobody in my life that could handle that.  I have tried being really cheerful and positive when I talk to people about it but my sister told me that I shouldn't really tell my mother anything about it because it's too awful and she can't handle it.  It is a weird concept that my life is too awful for my mother to handle. 

Andrea, how old is your DMD son?  Mine's 5 and has only been on deflazacort for about a month.  His behavior is noticeably worse but still tolerable and I just read that the first 6 weeks is the worst time for behavioral problems, so I'm hoping things improve soon.

 

Anyhow, didn't mean to get way off of the Buddhism subject.  Thanks for lending an ear.  Your DMD bud, Ruth


Andrea Cleary said:

Dear Ruth,

While my husband had retreated into his "cave" aftert the Dx, he kept telling me to go get my head checked because I must be depressed (for throwing my dinner utensils at him). So I started talking to a psychotherapist, who soon picked up the phone and ordered (nicely) my husband to come in, and our sessions morphed into marriage counseling. We were having a communication crisis for sure. My husband was adopted at  2 1/2, and I think he lacked early attachment, cuddling, etc as a baby. So he just shuts down in the face of strong emotions and won't let me know what's bothering him, I'm just supposed to "know". Then when I guess wrong (because I'm not too bright!), he's mad. Anyway, the therapy helped us to try to understand the "other".

Recently I hurt my knee again (20 years worth of issues with that) and have been off work, so I had the time to perceive lots of anger under the sadness, and I have gone back to talk, just a tune-up.

Maybe just talking with someone would help you too. My friends and family don't get it, but they mean well.

I think a "guided meditation" would be great, where you listen while doing. I hope Pema Chodron has one, because there is something very calming about her voice.

Yes, it's quite the journey we have been given, Ruth . May we meet along the path some day. Until then, we can leave eachother  clues, guide-posts along the trail, ok?

 

Good energy to you, Andrea

 

Dear Ruth,

Simon is now 10 1/2 and has been on Deflaz for 3 1/2 yrs. There were some awful melt-downs that first year, and I got worried because he would physically attack his little brother (3 yrs younger). And we would have to carry Simon to his room or whatever the designated time-out spot was, and boy was he strong for a kid who was supposed to have DMD! He would grab on to door frames or any little thing on the way and not let go, we'd have to pry his little fingers loose. And he stopped growing 3 years ago, so little brother Will who happens to be big for his age (Simon used to be too) shot up past him in height and is now about 6 inches taller and could defend himself. But things are much calmer now. I don't know if it's just the body adjusting to the meds, or if it's his age and maturity, but he is able now to control himself for the most part. I think it helped that we have always told him that his meds "trick his brain" by telling him to eat more when he has already eaten, and that they tell him to "make a big deal out of something little", but that he can be aware of this and try to control himself. He seems to take pride now in the fact that he resisted dessert or yelling at William or a class-mate when he can't concentrate. I think I got the "awareness" idea from the whole Buddhism thing, and if it helps me, then I figured it could help him too.

On the www.unmind.ning.com site my name is "Wanda" (cute story but too long to explain today, gotta go do groceries). You can make up any name you want or be a mythological character if you so wish. Actually my marriage councelor/therapist (PhD in Social Work, not a psychiatrist) is on there too. I did not know of her interest in Buddhism until I had mentioned Pema Chodron to her in a session one day. She let me know about the site, etc. I guess that's why we got along so well. A lot of the discussions are way over my head and too weird, but there is still a sense of support and empathy.

I love that picture of your son with his hair standing up on end. So cute. I work at a test center (blood drawing,etc) of a children's hospital, and I just get such a kick out of meeting all of the different little kids and their little personalities. Yours looks like a character for sure. How about your daughter? My youngest, William, is so aptly named...Will. Need I say more?

Take care Ruth. Talk to you soon.

Andrea

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