Tuesday, December 18, 2012

I Fall Down and I Get Back Up

Kelly Nieuwejaar
Recently, while watching TV with my husband, he mentioned he’d had an appointment with his neurologist earlier that day. He then announced that he was the same or better. “Better.” That word seemed to echo off every wall in our house. And then I barraged him with questions at warp speed, of course.

How could my heart not leap at that? And then he said it: “It was just the time of day. You have good days and bad days.” Way to bring the house down, Khoren.

I feel that way about hope: Sometimes I have it and sometimes it starts to fade. Believe me, I think hope is powerful, so I try to hang on to it. But Khoren doesn’t really have hope at all. I say that because that’s what he tells me. I’m not criticizing him or feeling sorry for him. He simply doesn’t believe in it.

He’s tried various disease-modifying therapies, chemotherapy and acupuncture. But when I start reading about CCSVI and diets that are largely comprised of organ meat (ick) — options that some with MS say work for them — I become intrigued. I want him to consider them, but he doesn’t. He’s afraid of disappointment. This I know to be true. So to avoid that, he avoids hope. I don’t know if that’s good or bad. We talk about it and I see his perspective. I can’t imagine how I would be if I took his place. I get lost in thought.

I don’t know what we were watching at the time. But someone said, “I fall down and I get back up.” He looked at me and smiled, and said, “See? That’s what I do.” Maybe that’s enough.

Kelly Nieuwejaar lives in southern Maine with her husband, Khoren.


  1. My mother always said "the alternative stinks". I use that phrase to someone at least once a day. With ms, my condition varies from hour to hour, even minute to minute. It's easy to understand why your husband feels somewhat hopeless...the alternative really stinks!

  2. I must disagree with you… and your husband. He does believe in Hope, he just doesn’t know he does… Why keep fighting – why keep trying different things? He must believe (even if in the most miniscule amounts) otherwise he would’ve given up on the disease a long time ago; the fact that he doesn’t give up… he hasn’t given up, well that my friend, is the seedlings of Hope right there. (Just an FYI, I was diagnosed with MS in May of '99 and I too have tried various disease-modifying therapies, along with chemo & acupuncture. For the last year, I've been on Tysabri and it has helped... but I know not everyone is the same.) Happy Holidays!

  3. I'm sorry to read that he has no hope. :( There is ALWAYS hope!

  4. I will be praying for you and your husband, Kelly. I am fighting the same battle of having hope everyday...my husband also has MS. The doctors told us that he caught it early and he wouldn't end up in a wheelchair like others if he just kept taking his medicine. His leg function has worsened a good bit since he was diagnosed even though he takes his medicine everyday. Yet we can't seem to walk very far down the street without a lot of muscle fatigue and stumbling. I have heard hopeful things about the strides that are being made in medicine for MS, I hang onto that. At the end of the day, I count the blessings we do have.

  5. Hi There. I can understand what you are going through. My husband was diagnosed with MS 16 years ago and then 2 years ago I was also diagnosed with it..it's rare, but it happened to us. With having 2 young kids, working full time and taking care of my disabled brother and husband..sometimes I lose it. I find myself afraid of the future. Counseling has helped me cope with it. His is more outwardly obvious because of his walking. I miss the days that we could just go walk the mall. We have to be there for each other..thats how we keep the hope. Hang in there.

  6. I'm diagnosed with progressive MS and have tried everything. I had the CCSVI procedures twice! As much as I'd like to be hopeful it is difficult having faced loss of career, financial difficulties, endless pain, worsening disability etc. Whats to be hopeful about? I don't want to face several more years of this

  7. I'm so sorry for your stuggles, it's interesting to hear the caregiver's side. My husband doesn't talk about my illnes. I was diagnosed with Primary Progressive MS in May, diet and exercise seem to be helping. I know I'm just holding it off, or slowing it down, but it's buying me time to still do things I enjoy. I can't walk very far without my legs deciding they are done, but the rest of my body wants to do more. That's very frustrating. Give the diets a try, they can't hurt and it may buy you some time. There are several out there, so find the one that works best for him and you. I'm following Dr. Terry Wahls diet, but there are Dr. Swank's and the MS recovery diet, among others. They may seem restrictive, but not as restrictive as not walking. Good Luck.

    1. get a prescription for physical therapy before it gets worse, they will keep it strong and show you how to stretch. I don't drag my right foot anymore, and have range of motion in my right arm...it's amazing after 4 years!

  8. I have had MS for 18 years. The concept of hope is different for everyone. I spent 12 years in human research at UCLA MS Research from 95-07. I did that in hope of giving the next generation hope. I am now relapsing progressive and on disability. I was fortunate to have planned for the inevitability of my illnesses progression. I had long term disability insurance through my employer and receive a generous amount of social security disability money as I was a large wage earner as a high level executive.

    If there is one thing I have learned in my 18 battle with MS the only one who can take your hope away is you. I have seen many, many people "give up" and let the disease take them. As for me I choose to fight, I walk everyday with the help of Ampyra and the love and support of my wife. Hope is relative, if you are still moving and still fighting then you have hope. Hope is not about a cure for this disease it is a hope for our own future and living as long as possible as happy as possible.

    I embrace the little victories and allow myself to mourn the loses. I only allow myself 30 minutes a day to mourn though. Life is too short and my life too precious to do anything else.

  9. Thank you Roy I've had MS for almost 19 years and feel the same way. There is always hope! This can be a personal battle for me but I too try to remember the little victories and try to limit the self pity. It doesn't make me stronger and for now that is what I crave more of the positive and remembering that there is always someone who is worse off than you. So I agree let's look to life as a great experience in remembering what you have, not what you have lost. Remembering that changes usually have a silver lining whether you see it immediately or not. I thank the Lord that I have 3 healthy adult children and 1 adorable grandson and that I am here to experience life with them. After last Friday's events I think we should all be very thankful for our lives and that we are all still here.

  10. I think I'm a bit like Khoren. I've been deteriorating with PPMS since 1999. Some types of "hope" border on delusion. Only my faith gives me any hope. NO doctor or neurologist have EVER given me any real hope of "getting better". It sounds like Khoren has lost hope in seeking cures. But he still keeps going. He falls and gets up. That's what I do. It's hope in life and hope in the day. And that seems like a good thing to me.

  11. This may not apply at all, but you might want to consider seeing a naturopathic doctor. My symptoms were the same as those associated with MS (numbness, tingling), and the naturopath told me that I had 2 viruses that were damaging my nerves. She gave me anti-viral liquid supplements and the difference was unbelievable! Within 2 days, the pain in my hands and feet stopped completely. The naturopath also told me that once the viruses were gone, she could give me supplements to heal the nerves. I’m not sure that your husband has the same problem, but it’s worth a try.