Chimp Speaks, Part I

“Thinking Chimp,” by windelbo.

This is an entry by my husband, Chimp. No, I’m not actually married to a philosophizing simian – “Chimp” is his longtime internet handle. – Jocelyn

Jocelyn asked me if I’d contribute something to No Poster Girl, and I wrote some things that I eventually thought might be fit for the light of day. She could use a week without the pressure of crafting an entry, and I am trying to work my way through a year-long bout of writer’s block.   I don’t think I can tell her story as well as she does, and I won’t try.  I have nothing to add about the disease itself that others won’t say better than I can.   So instead of those things, maybe I could write some things about what my part in our story is like.  I will warn you that I talk for a living, and I can talk for a long time.

“She would of been a good woman,” The Misfit said, “if it had been somebody there to shoot her every minute of her life.” -Flannery O’Connor, “A Good Man is Hard to Find”

I spend almost all of the time I’m not working taking care of Jocelyn, each day until my back gets sore and I can’t do any more.  I’m fighting a disease of my own – anklyosing spondylitis, a form of rheumatoid arthritis – but it’s well-managed.  Knowing when to call it a day is part of the management.  We don’t go out since she can’t take the strain of an hour going to a restaurant or a movie.  We don’t get outside on the weekends.  We don’t travel to visit family or take vacations when I’m not teaching.  I write, teach and take care of Jocelyn all the time.  Our television died in January of 2009 and I didn’t realize it until May of that year.  We live very simply, but out of pocket medical expenses eat up most of what’s left.  I am still very much here and every bit as committed to making a life with her as I was in our best days, before the illness ever appeared.

All of that will be familiar to friends and family, and no surprise to anyone who has read a bit of No Poster Girl.  It’s not lost on friends and family just how much this takes either, and those close to me have always been vocal and effusive in praising me for my part in this.  I’ve been told I’m “saintly” and “superhuman,” and that “there just aren’t people like [me] anymore.”  I’m always grateful when people say these things to me, and I know that they want to be very vocal in their support.  They often don’t know what else to do, and some affirmation always lifts my spirits a bit, even if I’m self-effacing when it happens.  Of course, I can never let go of one inconvenient fact.  All of these things are false.

I have no extraordinary abilities.  I can’t play as fast as Jaco or hit the paint with Mike Mussina’s knuckle-curve.  I’ve had a lot of luck doing what I love to do, which is philosophy, but about 90% of that is stubbornness and squeezing three nickels out of every one of my intellectual dimes.  Anyone who thinks of me as saintly is badly mistaken, as is anyone who thinks I cannot be cruel or cowardly.  I’ve left some messes behind me.  Maybe a little digging would show the same of most saints – Augustine has his Adeodatus, after all.  And maybe to live an extraordinary life in that sense is just to make something great out of messy particulars.  But if so, what I do is not that extraordinary.

As Jocelyn got sicker, one of the things I would try to do was remain open to what people told me about their own struggles.  When I would try to explain what was happening to others, people often opened up to tell me stories about how they or their families had had to do similar things. While I wouldn’t have wished those things on any of them, it felt better to know that I wasn’t the only person in the world dealing with something like this.  There is nothing special about me in those respects; people like me are all around you, you just haven’t heard their stories.

When Jocelyn’s illness began to accelerate in 2006, I had moments where I didn’t think I could keep up with it.  I had to fight a growing sense that it would be too much for me over time.  Somewhere in that year or the next, something struck me.  I could do this. Women have done this.  I don’t mean to say that if women could do it, anyone could do it, as you might say, “That question was so easy, a child could answer it.”  I realized that what was happening to us has happened, in one form or another, as long as there have been partners and families.  The last daughter in a big family never marries, stays home to take care of the last parent to go.  Grandma moves back into the house or the apartment, and her daughter takes care of her. Then her last granddaughter takes care of her first granddaughter. All of this becomes invisible because of who does the work, who cares for whom.  They become part of our past, but not our history, not what we share with one another in public.  I would have wished all of them less circumscribed lives if they had wanted them, but when I came to realize they had been there all along, I did not feel so alone.

Maybe that sounds optimistic when you read it.  I don’t believe it is.  Optimism would suggest that the fates or higher powers will inevitably or eventually arrange things in some better possible way, perhaps even the best.  I don’t believe that, and neither does Jocelyn.  This doesn’t make us pessimists, either.  There is a willful disregard to being an optimist and a certain indulgence to being a pessimist – allowing yourself to let go of a sense of having a hand in an outcome, and congratulating yourself for being more clever than the rest of the room.  Pessimism is a luxury.  Pessimism is an abandonment.  When things were at their worst in 2008, I once said to my mother, “I can’t get pessimistic.  Things are too bad for that.”  Whether things go better or worse from where we are has a great deal to do with what we do.  In short, shit matters.

It’s a shame that it does, because we only control small parts of it.  And knowing as little as we have at so many stages has made every turn for the worse more terrifying, every turn for the better more confusing, and every lull in between feel like the beast was catching its breath to come back for more.  No one could tell us what would come next, or what we could do when it came.  Medicines produce the opposite of their intended effects, test results turn hypotheses on their heads, and whatever pattern we find by adjusting will adjust itself a year from now.

Many of you reading this still have something that we do not.  You have a story of a conventional sort.  Your kids will be born, they will graduate in 2023 or some such, you will retire to the Gulf Coast or the Poconos or the Ozarks.  You’ll wake up tomorrow and the appointment will follow the lunch at the restaurant that will be open on the street you drive to your job each working day.  A will follow B will follow C and you will anticipate A’s arrival back while you’re tooling around with C.  But there is no such story for us any longer.

Diseases have their stories, of course.  They only have two, though, and both are written by those who do not have them.  In the first story, our heroine contracts The Disease, but The Disease never has a chance because our heroine is full of spunk or gumption or has an old soul (every folk tale has its regional variations) that The Disease cannot overcome.  Our heroine has her dark night of the soul. The Disease is a formidable opponent and looks like it might snatch her from us, but our heroine outlasts, outsmarts, out-hustles The Disease.  And we all feel better for having cheered her on.  The end.  In the second story, our heroine contracts The Disease, but despite her strength, spunk and gumption, The Disease is mightier and they march together towards her Noble Demise.  Everybody loves a good Noble Demise, one where you cry and your crying for our heroine redeems her, you and anyone who might be standing nearby.  Everybody loves this story.  We love this story, and we have been close enough to it to feel its breath on our cheeks.  One anomalous test result years back hinted at the possibility of an incurable – surely terminal – form of adrenal gland cancer, and oh, how we wanted it to be cancer.  We know what cancer is.  Cancer’s an unholy bastard, but cancer makes sense.  Everyone believes you when you have cancer.  The whole world believes in cancer.  We stared at one another in silence that night, but each of us could feel the other thinking, “Let it be cancer, let it be cancer…” And isn’t that just like cancer not to show up?  Good for nothing metastasizing sonofabitch.

There have been people – people I have no need to speak to again – in whom I could sense some exasperation at her failure to pick one of these stories.  Get better or get out already, they seemed to say.  Maybe the grand scope of history was on their side.  Those who got sick and got better could keep up with the tribe as it wandered across the savannah; those that died could be missed and missing them posed no further danger.  Those who get sick and don’t get better are a recent invention, held together with pharmacology and surplus nutrition, and no one is born ready for this sort of story yet.  How could you be?  Maybe you went to bed last night with the whole thing figured out, and you think you’ve written a third story.  But The Disease got up two hours before you, had four cups of coffee and reinvented itself after it read your draft.  You wrote that story – and a hundred drafts before it – because you wanted to feel like you controlled The Disease, that the world would behave itself if you pushed the right buttons in the right order.  But you do not control The Disease.  You cannot control it for her, and you cannot control what her suffering does to you.  You live a life where those things you cannot control are pushed to the fore.  You cannot stop resisting it, because doing so is walking out on her.  You must become someone who is not diminished by these things.  How do you live a life where what matters most is not in your control?

Part II continues here.

Advertisements
This entry was posted in Chimp, ME/CFS and tagged . Bookmark the permalink.

45 Responses to Chimp Speaks, Part I

  1. Carol Dunlap says:

    Chimp, are you in any kind of support group for caregivers of long-term seriously ill spouses? I know you aren’t in a position to go to meetings, but something online? There must be times when you need bolstering by others who are traveling your road or something close to it. – Carol

    • The Chimp Who Married Jocelyn says:

      Carol – I don’t, no. I imagine there are such things, but I have never come across one that grabbed me. I have never been that engrossed by online forums, and the sort of daily contact that makes them work for people is something I always had trouble maintaining. I would certainly be open to visiting one if you or others had one to recommend. There was a brief period where I saw a therapist in 2008, but the benefits I saw from that were fairly limited and I have not continued it. (I also tend to ask questions back and get into disagreements with clinical psychologists and therapists on methodology and practice, and while philosophers take that as a welcome mark of respect, psychologists are not inclined to do so.)

      Much more important has been a circle of family and friends who have been generous beyond all reasonable expectations and helped me through much of this. (Part 1 is the more grim – better stuff comes up in Part 2.) We landed in a much better situation here, closer to family and with friends, neighbors and colleagues who enrich our lives immensely. And that has done more for my mental health than any other single thing, I think.

  2. lg says:

    once again tears flow from my eyes….thank you for what you do for jocelyn and thank my husband for what he does for me….it’s mind f-ing sickness….it grabs you and squeezes you tight….those who can continue on are remarkable; just for keeping on.

    thanks 4 sharing your story, which is our story.

    hugs to both of you.

  3. You are walking such a daunting path. I am extremely grateful to you for balancing so many things, for meeting the challenges of the illness, for being a loving husband, for making Jocelyn laugh…

  4. Baffled says:

    Thank you for writing your story. The caregiver stories are very rare and very infrequently told. I think it is because the emotions are difficult and not socially acceptable. You don’t want to tell your friends that you want to abandon your spouse because you can’t handle them being chronically ill.

    In my house, I’m the one that is sick and my husband is the one that cares for me. He has had a huge struggle coming to terms with my CFS/ME. He almost left but his ah ha moment was “my parents raised me better than this [walking out on someone who is ill and in need of care]” Since that point things have become better. Not great but much much better. I think that if we hadn’t been married for 20 years already our marriage may not have survived. It is scary how common it is for the husband to leave the sick wife. I congratulate you on staying and taking on the role of caregiver. It is a tough tough job. People have no idea unless they have been in the same position.

    I too have been surprised by people opening up and telling me their own stories of chronic illness. I’m shocked at how many women I know are dealing with Fibromyalgia. Two contractors that worked on my house this past year have wives at home that are horribly ill from it and they are trying to work full time and care for them as well.

    I applaud you all!! Please continue to tell your story.

    • The Chimp Who Married Jocelyn says:

      Thanks, Baffled. Having also been “raised right” by my folks, I could never really get my head around the idea of leaving. I can sympathize with your husband, though. The times I describe being overwhelmed and not quite understanding how I could do all of this would hit anyone, and each caregiver has to figure a way to come to terms with all of that if they’re going to continue. For some people, getting their heads around those possible futures is probably more difficult than any one of the tasks involved. I’m glad he’s found some ways to approach it, and I hope he can continue to do so.

  5. Meg Carlson says:

    Thank you, Chimp, for a very thoughtful and honest post.

    Your idea that diseases have a story has long fascinated me. Arthur Frank, in his book The Wounded Storyteller, describes a third story which he calls the “chaos narrative.” Chaos stories are actually anti-narratives. Narratives progress through time and space, from a beginning to an ending. In a chaos narrative, one thing happens after another, but nothing leads to anything else; there is no ordering of events. No ending, in the sense of resolution, is visible. Chaos stories are difficult to listen to because they feel threatening and provoke anxiety. They contain nothing but life possibilities that have the potential of becoming anyone’s story. People withdraw from those who are living the chaos story and this withdrawal becomes a further part of the chaos. Frank says that “Chaos is what never can be told: it is the hole in the telling.”

    I look forward to reading your part two. Blessings to you both.

    • Jocelyn says:

      Meg, that’s an absolutely wonderful explanation. I said in my post about the illness narrative that one of the ways we as humans try to understand the world is through telling ourselves stories. And our stories as ME patients are a mess – no explanation, no resolution, nothing that makes sense. No wonder we band together – we understand and can tolerate each others’ chaos stories in a way outsiders can’t.

      • Nina says:

        What an excellent post and great discussion!

        I’m not up to writing much but I gained a lot of food for thought from this.

        Thanks, Chimp, Jocelyn and Meg!

    • The Chimp Who Married Jocelyn says:

      Thanks, Meg. That’s not a bad way to think of this experience, or at least parts of it. Part 2 talks a bit about my responding to the uncontrollable parts, so I’d be interested to hear your thoughts on that.

  6. Francesca Fitzgerald says:

    M, you may not have chosen this role in life, and there may be countless people out there who care for sick loved ones, but that does not make you any less heroic. I am eternally grateful that you and Jocelyn have each other!

  7. Bunnyrunner says:

    I care for my wife, in return, she cares for me by home working on line. Her body may be broken but her mind is sharp as a knife. For us it’s a matter of coping strategies that allow us to do what we can and leave what we can’t and develop the wisdom to know the difference. It has cost us “friends” but those who remain are truly valued.

    • The Chimp Who Married Jocelyn says:

      I’d agree. I’ll talk about some of that what to leave/what to keep part next time. I think we’ve been lucky in that we’ve had few friends and family members who were openly hostile or dismissive of her. We too have pared down to a core of truly supportive people, but I regularly remind myself that it is both deep and broad (if not as broad as the circles in which many people travel). I like my life, and I like the people who figure prominently in it.

  8. Chimp, I was particularly touched by the following words:

    “There is a willful disregard to being an optimist and a certain indulgence to being a pessimist – allowing yourself to let go of a sense of having a hand in an outcome, and congratulating yourself for being more clever than the rest of the room. ”

    “Many of you reading this still have something that we do not. You have a story of a conventional sort. Your kids will be born, they will graduate in 2023 or some such, you will retire to the Gulf Coast or the Poconos or the Ozarks. You’ll wake up tomorrow and the appointment will follow the lunch at the restaurant that will be open on the street you drive to your job each working day. A will follow B will follow C and you will anticipate A’s arrival back while you’re tooling around with C. But there is no such story for us any longer.”

    “One anomalous test result years back hinted at the possibility of an incurable – surely terminal – form of adrenal gland cancer, and oh, how we wanted it to be cancer. We know what cancer is. Cancer’s an unholy bastard, but cancer makes sense. Everyone believes you when you have cancer. The whole world believes in cancer. We stared at one another in silence that night, but each of us could feel the other thinking, “Let it be cancer, let it be cancer…” And isn’t that just like cancer not to show up? Good for nothing metastasizing sonofabitch.”

    Beautifully written!

    I am in the same fortunate and guilt-ridden position Jocelyn is in: I am married to an unbelievably supportive husband. There is no way I could manage to tolerate this disease without his support. He and you are more rare than you give yourself credit for. It takes a very special person to stick around and succeed in making the best of miserable circumstances!

  9. zzirf says:

    Not many people realize that we are not in control because while they are so busy doing they think it is they who have the power – but you know the truth and so do I.

    • The Chimp Who Married Jocelyn says:

      I hear you, zzirf. There’s a value in remembering what is and what’s not in your grasp. I’ll talk more about that next time.

  10. kathy d. says:

    I think what you are doing in supporting Jocelyn is wonderful. I know that women do this all of the time all over the globe. True. But still you get a lot of credit for what you do and how you do it. You do help Jocelyn have a life and enjoy what’s possible.
    I wish that both of you don’t feel that it would clarify the situation if Jocelyn had cancer. No. It wouldn’t. It would be excruciating.
    I say this as a 26-year CFS sufferer and as someone who stayed with an extremely ill spouse many years ago, whose loss has been a lifetime one for me. And I say this as someone who has lost several friends and has seen a family member go through hell with cancer, but whose spouse is also remarkable.
    The urge to leave, I think, is a healthy one, both for self-preservation — and that is a factor — and because the emotional pain of seeing your partner be so sick is so painful one wants relief or escape. It’s all normal and shows how deep is the bond and how important is the spouse and her well-being.
    I am in awe of how profound is your relationship and although Jocelyn is so ill, you share the
    daily life and the highs and lows, of everything involved. It does take special people to do that. It does.
    Given what I go through every day, sometimes at moments during the day when suddenly the bottom falls out and I have to go home or hibernate, watching tv and reading and can’t even talk to anyone, I have no idea how another person could deal with this. That individual would almost have to have ESP or be the kindest and most patient person. So again, I am in awe and feel a lot of respect for you and other life-partners who are there in every way.

    • Jocelyn says:

      Thanks for the kind words, Kathy. We truly appreciate each other. And I think you’re right that the urge to leave is understandable when trying to deal with an illness this all-encompassing. It’s scary, and who wants to deal with something so scary all the time? Facing an enormously changed life is difficult, continuously difficult.

      Chimp doesn’t say what he did about that test to minimize cancer at all – he didn’t fully explain this above, but when they were doing that test, it had been years since any doctor had had any real help to give us, and at the time, it seemed like pheochromocytoma would fully explain everything that was going on, and that treating it would give me some chance at a normal life again. But I didn’t have pheochromocytoma.

      At a very young age, I watched my father go through four years of treatment for Hodgkin’s Disease, starting at stage IV and going through 21 rounds of chemo. He’s been in remission since 1982, and one of the things he’s said to me within the last couple years is that he thinks my illness is worse than what he had to deal with in some ways. But you’re right, I wouldn’t want to have cancer on top of this, and it’s not a competition to see who can have the worst illness. I do think we should give ourselves permission to acknowledge that what we’re dealing with is truly awful, and part of what makes it so awful is, as Chimp implies, that we don’t get the built-in support that people with cancer do.

    • The Chimp Who Married Jocelyn says:

      Kathy – No, certainly no intent to diminish the horrible experience of cancer, or watching a loved one suffer through it. Both of us really did have that thought at the time, but the impulse was more like “anything but this!” That memory has stuck with me just because it is such a striking response to have, and it marked a particular sort of low point for both of us. Thanks for such kind words on top of that.

    • Jocelyn says:

      Kathy, I am so sorry to hear of your loss – I think I missed saying that earlier when I meant to. My brain’s a bit toasted today.

  11. rachel savin says:

    I am a moderately ill Chronic Lyme/ME and I would love to meet a Chimp like you. I do not need hands on caretaking, but I am not in training for a triathlon either. Prior to onset, hking in the mountains and swimming in glacial lakes would be my dream vacation. Now I walk a mile some days. I was a social worker with plans to transition to a elementary or middle school teacher. I have 3 boys in their early twenties, whose father is doing his best to make my life as difficult as possible. What do I say…about being ill, not working, not training for that triathlon? I have lost so many friends as there is so little understanding about this illness and its “realness”. Or you are supposed to be “fighting”, like you fight cancer and you win or you lose. This illness takes accepting, again and again, getting angry at “it” just uses up what little energy you have. So that question…what do you do? …”I do CFS”.?? Or do I look for that moderately rare male, who is doing CFS too? Any thoughts? And to the friends that have disappeared? “You need to save yourself”, said one. “Oh, thanks, that is very thoughtful.”

    • The Chimp Who Married Jocelyn says:

      Jocelyn had a coworker who said something along these lines (“save yourself”) to her. He was fired rather unceremoniously not long thereafter. Instant karma?

      You’ll definitely want my caregiving advice more than my guidance on dating, though. I was lucky to meet Jocelyn through mutual friends, because I would otherwise be too socially and romantically inept to find her if she were ten-pin bowling in the hallway of my apartment building. I hope you can meet people and they can learn of the illness gradually – come to understand it and appreciate how it limits your activity, but does not erase everything about you.

  12. Leonie says:

    Ah Chimp, you have put into words what I have been struggling to try to explain. I have a close family member who is so angry with me, because she feels I don’t do as she tells me to do & who thinks if I did I would miraculously recover, she thinks that I can believe myself better, I’m not thinking in a positive enough fashion or I would not stay sick. She does not live near me & she knows little of my daily life, even less of what I have or have not done to try to recover. It seems I am an affront to her, an insult to her belief that if I just thought harder & better I could be like that person who miraculously cured themselves of terminal cancer after a near death experience & go on to cash in on their experience. I am not playing the role in the story the way I’m meant to do. I am currently as yet undiagnosed with something new, I have a lot more tests & probably quite a few more specialists still to see before I may perhaps receive one, in the meantime I wait for yet another appointment & try to stay calm as I deteriorate. I know that feeling of hoping for something like cancer, hoping for anything that will bring with it treatment & any kind of resolution. I have tried to explain to her I have had to learn to live still hopeful, but empty of any expectations, these words seem to mean nothing to her. Sadly, I doubt she will understand what you are saying here either. All the best to both of you, I may have let my expectations go, but I still have hope for a better tomorrow for us all.

    • The Chimp Who Married Jocelyn says:

      Leonie – Sounds familiar. My sympathies. May the new thing eat the old thing, and burn itself out in the process. (Clinically unlikely as that may be…)

      • Leonie says:

        Thanks Chimp & thanks for telling your story 🙂 Trying something new even though they are clueless, a little remission if I’m lucky will be as good as a holiday. I hope for all of us there can at least be a remission every now & then xx

  13. Flo Henson says:

    “There are 42 million family caregivers now, a cohort that includes more than just adult children watching over their aged parents, although they predominate. Tens of millions of us are engaged in this hard, transformative task; this dance in which who leads and who follows changes by the minute; this time in life that can’t be over quickly enough and that we want to last forever; this labor of love.” http://newoldage.blogs.nytimes.com/2011/12/02/we-are-everywhere/?scp=1&sq=caregivers&st=cse

    The good news, according to accumulating research, is that caregivers are in better physical and mental health than controls. I figure it’s partly because 1) they are forced to be active and 2) they have the peace of mind that comes from doing the right thing.

    Hang in there.

  14. kathy d. says:

    To Leonie: Please save yourself, protect yourself from everyone who causes stress and who doesn’t understand. Why do you have to use up precious energy dealing with this relative? You do not have to do that. The first rule for anyone with this disease is to protect yourself in every situation, including with people who don’t understand and bring you this level of distress. You are not obligated to talk to that person or specifically to discuss your health problems with relatives. You simply don’t have to do it. You have enough problems just dealing with this illness. Talk to people who give you support or at the least don’t tell you what to do or tell you that your happy attitude will cure you.
    I’ve seen people who are happy, who have wonderful lives, beautiful children, loving spouses, friends, good jobs, who have gotten terminal cancer. It has nothing to do with attitude. (The Bernie Siegal attitude got thrown into the dustbin of history decades ago).
    Barbara Ehrenreich wrote a book in the last few years, as a cancer survivor, in which she throws that whole school of thought and phony Pollyanna attitudes out the window. I hear the book is great from people who have fought tough illnesses.
    I hate to hear of people dealing with relatives like this. You are sick: You don’t have to do that.
    Think of your own needs first and keeping your stress levels down. Stress exacerbates this disease. I have a friend whom I love. She gets stressed in December as she does a zillion projects, meals, gifts, makes candy to sell for charitable groups. However, her voice is always in a loud, fever, wound-up pitch. I stay away for the month as much as I can. Just her voice and tension causes my symptoms to flare up.
    Protect yourself is the motto of this disease. It has to be.
    And to Jocelyn: Your father is very lucky. It sounds like he had the optimal medical care possible. It was not usual for people in 1982 to have long-term survival with that disease. How wonderful for all of you that he beat the odds. Best wishes to him and your family on that. (I known that disease well and its other possible outcomes.)

    • Jocelyn says:

      Yes, my dad is ridiculously lucky given when he was diagnosed and what his diagnosis was. He was in the Navy at the time, and was treated at Bethesda Naval Hospital in Maryland. As you might have guessed from the four years and 21 rounds, he had two reoccurrences. With the last round, they told him that if he had another one, there was basically nothing more they had to give him.

      He was later part of a study of people who did his job in the Navy (nuclear machinist’s mate) that found they had an elevated risk of Hodgkin’s. It was thought it might have something to do with their level of exposure to benzene.

      Fifteen years after his last remission, he was diagnosed with a kidney incidentaloma that was only discovered because of the intense amount of follow-on he receives because of his medical history.

      I’ve wondered if he and I are both coalmine canaries in a certain way, but there’s nothing scientific about my wondering that.

    • Leonie says:

      Thanks Kathy xx,
      she makes every effort to distance herself most of the time apart from the occasional swoop to email, lecture & get aggro at anything I may respond, so to be honest I can usually simply wish her well. The joys of dysfunctional families 🙂 I posted an audio from Toni who wrote How To Be Sick the other day & tagged her (a stir of the pot I know), I’m not holding me breath waiting for her to get it, lol. Over zealous New Agers hooked on “positivity” can be as painful as ex smokers at times & that’s coming from a New Ager from way back. I know I can’t resolve her issues for her, that’s hers to do alone, glad to leave her to it.

  15. kathy d. says:

    Now, that’s an interesting point about the benzene. I’ve always wondered about the level of toxic chemicals on military bases. That disease seems to hit younger people.
    There’s been cancer in my immediate family, and I wonder, too, about the canary in a coal mine syndrome.
    But my Eastern European relatives and their offspring have no cancer or any of these immunological diseases — and they have incredible longevity.
    It’s the other side of the family that has allergies, cancers and so on, the Irish relatives.
    I wish I knew.

  16. BreatheEasy says:

    Gorgeously written, Chimp. Please clone yourself and mail me a copy 🙂

  17. kathy d. says:

    Did you see the information posted at ME/CFS websites today that Dr. Lipkin has gotten a lab at NCI for Dr. Mikovits and Dr. Ruscetti to work in Frederick, Md. on the CFS blood study? Dr. Lipkin also will not be working with WPI and defended Dr. Mikovits’ right to copies of her research notebooks. This validates and supports her. Thanks to Dr. Lipkin for his principles!

  18. kathy d. says:

    Yes, it’s great! And I’m glad that a well-respected research scientist, Dr. Lipkin, backed Dr. Mikovits and her right to copies of her own work. I wonder how all of the nay-sayers are doing now. Even if her findings don’t turn out as wanted, as least it’s being carried out in a principled way, without negativity and criticism. She has support, good.

  19. Pingback: Chimp Speaks, Part II | No Poster Girl

  20. radha says:

    Jocelyn and Chimp: I think I might know and met Chimp many years ago in 2008 at the CFS meeting. Is that you Chimp? Jocelyn, you look really beautiful and I am so happy that your husband is so understanding and there with you through this. Hang in there, and count every beautiful day with your partner. It is people who love us that get us through this difficult disease.

    • The Chimp Who Married Jocelyn says:

      Radha – Yes! We did meet in Baltimore back in 2008. I owe you an email, but you can read a lot about what’s happening with her right here, too. Let me know how you’re doing when you have the energy.

  21. Pingback: Happy Blogiversary to Me | No Poster Girl

  22. Pingback: No Poster Girl

  23. DanaLee Wasserman says:

    Jocelyn, I remember calling your Mom, after my husband came home with news of your Dads illness. She barely knew me, but I offered to care for you when she took your dad for treatment. You were a cutie. Your Dad was so brave..we so admired his spirit. And now that same spirit shows up in you. You and Chimp are a special pair. Your Dad contacted me years ago and asked me to pray for you. Then he went off my radar and I was so concerned for both you and him..my husband died in’93 of complications from a liver transplant..he had Hemachromatosis .iron overload. I married a physician 4yers ago. He is a wonderful man. He is the one who set up my Facebook page two days ago…and now I have found you…I am sure we will chat again, but for now I send you love and many hugs, Dana Lee Walker- Wasserman

  24. Pingback: How to support someone with invisible chronic illness The Power of Poop

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s