On Being Resilient

On Being Resilient

By Sharon McClellan Thomason


One thing that families living with HD/JHD learn fairly quickly is resilience.

As a grassroots nonprofit run by family members living with Huntington’s disease, Help 4 HD International practices resilience as an organization on a daily basis. HD hasn’t been able to break us as individuals, and Mother Nature won’t break us as an organization. We will continue to serve our families, despite devastating events like Hurricanes Matthew, Harvey, and Irma. Matthew didn’t stop our annual symposium in October 2016; Harvey is not stopping our Houston HIPE Day on September 30; Irma is not stopping our annual symposium in Tampa on October 21, next month. We are resilient!

According to “Developing Resilience” (https://www.skillsyouneed.com/ps/resilience.html), resilience is “the ‘rubber ball’ factor: the ability to bounce back in the event of adversity.” The article goes on to say that, “Resilience is NOT [emphasis mine] necessarily about overcoming huge challenges; each of us faces plenty of challenges on a daily basis for which we must draw on our reserves of resilience.”

Sometimes, then, resilience doesn’t mean we vanquish adversity; it means we keep going in spite of  adversity.

Those who live with Huntington’s and Juvenile Huntington’s disease would probably agree that there’s more than enough adversity to go around just in the course of daily life: being at risk, learning that a loved one has tested positive, dealing with a new symptom, finding a doctor who’s familiar with the disease, finding the right med (or combination of meds), finding an appropriate care facility, losing one’s independence, losing part (or all) of the family’s income … the list goes on and on.

So does everyone have resilience? Is there some secret formula? How do you deal with all the adversity this disease throws at you?

First, everyone who is not totally compromised by physical or mental illness has some degree of resilience. It may be physical, mental, or emotional, or any combination of the three.

Think back to childhood: when you fell on the playground and scraped your knee, you got back up and kept playing. That’s physical resilience. Nearly all of us have seen a child who’s been felled by the flu only to bounce back, filled with energy, as soon as the fever is gone. Again, physical resilience. An adult who’s had a knee replacement eventually walks normally again. Physical resilience.

Again, let’s go back to childhood. Remember that bad grade on a school test? You studied smarter the next time, and you aced the next test. That’s mental resilience. As an adult, you may have become frustrated at getting to the grocery store only to forget what you went there to get. Next time, you write out a list, or you use a mnemonic device (a memory trick). Mental resilience. Sometimes it’s devising a strategy to deal with adversity.

Maybe as a teen you went through a bad breakup, but eventually, you decided to try dating again. That’s emotional resilience. Most of us have known someone who’s gone through severe depression, but through medication and/or counseling, that person has come through the depression. Again, that’s emotional resilience. Someone who’s lost a beloved pet has grieved the loss but has learned to love a new pet. Emotional resilience. Sometimes it means admitting there’s adversity and asking for help.

But what if the hurt or the grief or the loss or the fear is so overwhelming that it seems impossible to bounce back from such intense adversity? Can resilience be learned? Yes! It can be learned, and it can be practiced.

According to “Developing Resilience,” the first step is awareness. Notice what is going on around you and inside your head. Second is thinking. Learn how to interpret the events that are going on in a rational (“it’s not the end of the world”)way. Third, reach out. Know when (and often whom) to ask for help. Finally, develop fitness—the mental and physical ability to cope with adversity without becoming ill.

The American Psychology Association (APA) in “The Road to Resilience” offers several strategies to build resilience (http://www.apa.org/helpcenter/road-resilience.aspx). Those that I find particularly helpful in living with Huntington’s and Juvenile Huntington’s disease follow:

  • Make connections—HD and JHD are isolating, partly because they are “rare” diseases that people don’t understand and partly because the progression of the diseases can stretch out over such a long period of time that people, even family, drift away. One of the most empowering things for me is knowing I am not alone. I began my connection with others back in the 1980s, with a support group that met once a month, an hour’s drive away on a school night. The love and understanding that I found there kept me going back month after month and began my introduction to community members that I’m still in touch with to this day. I’ve connected with people through Yahoo groups for caregivers, various Facebook groups, conventions, fundraising and awareness events, education days, and symposia. I talk to strangers on airplanes and in the grocery store, and find out that lo and behold, they know someone affected by HD. Hmmm ….. maybe not so rare after all? These people have become my extended family.
  • Avoid seeing crises as insurmountable problems—Granted, it can be daunting to find the answers and help we need, and maybe we can’t even find it where we’re looking. I have a friend in California who recently needed to place her son in a care home; she couldn’t find one in California that would take him, but she found one in New Jersey, and she’s moved him there and is living nearby. Not the ideal solution she’d hoped to find, but a solution nonetheless. Networking is important here; talk to those connections you’ve made!
  • Take decisive actions—This goes with the suggestion made above. We can sit around all day wishing the problems would go away, but they won’t. We have to choose a course of action that moves towards a resolution that we can live with. For me, advocacy is a large part of a very deliberate decision to do SOMEthing, ANYthing, in the face of a disease that often leaves us feeling quite helpless. When behaviors with my loved one have gotten out of control, I’ve had to take actions I didn’t want to take, having him hospitalized, which in our state involves being picked up by the sheriff’s department and taken to the hospital handcuffed, in the back of the deputy’s car.
  • Look for opportunities for self-discovery—It’s important that we not lose our sense of who we are in the face of HD. While it’s easy to get lost in the challenges of living with HD, each of us is more than the disease, more than a patient, more than a caregiver. Nurture those other parts of yourself!
  • Maintain a hopeful outlook—This is probably the most hopeful time in the history of Huntington’s disease. There are very viable therapies and even possible cures on the horizon. Read about the clinical trials. Get involved in any that you can join. Listen to our research updates on BlogTalkRadio (blogtalkradio.com/help4hd) and on our Vimeo channel (www.vimeo.com/help4hd).
  • Take care of yourself—You know the old saying, “On an airplane, put the oxygen mask on yourself first.” It’s true that if we don’t take care of ourselves, we cannot take care of anyone else. It’s true that people with HD/JHD who live a healthy lifestyle generally seem to do better with the disease. Whether it’s taking a walk, reading a book, taking a bubble bath, doing yoga or photography, playing music, getting a massage, a manicure, a pedicure, whatever recharges your batteries, do it!

Practice resilience! Be that rubber ball! Adjust your sails! And please, join us at our next event!

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Community talks about intimacy, education with HIPE panel

**Mature material has been changed for our audience**

The following is a transcript of the HIPE (Highly Interactive Participant Education) questions and answers at our education day in Sacramento, California. The panel of experts included Dr. Vicki Wheelock, neurologist; Dr. Sasha Duffy, neurologist; and Lisa Mooney, LCSW, all from UC Davis.

Question 1:  I love my wife, but every time there is intimacy involved, I feel as though it isn’t consensual; that’s how I’m feeling – though it is consensual; why do I feel like this? Why do I feel as if it is not wanted, but it is?

Response: I’m going to go ahead and broaden that question a little bit, if it’s ok. So, intimacy is a big area that changes, first of all, with any of us, but maybe a little bit moreso with Huntington’s. Remember that part of that is that people with Huntington’s can’t necessarily pick up on the emotions of their partners and the people around them; they can’t read the signs and the signals, and there is no bigger place that’s happening than when you’re being intimate. You’re not usually doing words for everything … some people do words for everything, but it’s a lot of non-verbal, right? It’s a lot of non-verbal communication. So, if you just take it back a little bit, your intimacy changes through the life cycle very much, and it changes with illness – an illness that affects the mind and the body, and this one does both. It (HD) does change people’s responses, their interest level, the way that they show caring, the way that they don’t show caring, the way that they express their needs in every possible way. There is nothing more unique than the way that we are when we are with our partners. So, I think acknowledging, understanding that that’s going on. Letting the person know – ‘cause if you’re feeling something, they might also be feeling something. So, I think it’s important to try to talk about it. Maybe not at that time, but pick a time to talk about it, and then if there are physical issues, or if there are emotional issues – I’ll just pick one – depression can affect intimacy in a huge way ­– then this is something you can bring to your doctor, you can bring to a therapist or counselor to talk to. Sometimes it’s individual – you just want to talk to your own provider – and sometimes you should go as a couple and talk about it, but don’t just suffer silently, don’t suffer alone. (Dr. Vicki Wheelock)


Question 2: I can’t stand when people stare at my son. What should I do? I want to get angry and literally, sometimes, want to get physical with somebody, but I know I can’t, so what do I do?

Response 1: Educate; that’s your moment. That’s your moment to educate someone to what JHD and HD is. I get it, I get what it feels like to get angry and defensive, and that’s okay for you to feel that way. – But take a pause, turn it around, and see it as an opportunity. (Sasha Duffy)

Response 2: I think that something that happens with HD is that people who don’t know about it – and for us, we all know about it – but Huntington’s is a rare disease – it’s considered a rare disease, so a lot of people don’t know about it. One of the common misperceptions about the person with Huntington’s is they’re intoxicated, or they’re using drugs or something like that. So that’s a very common picture that we see, a scenario that we see. (Someone in this room has some awesome T-shirts that’s like—why don’t you ask about it?) Sometimes we recommend – I’ve had people say that those medic alert bracelets really make a difference, that when someone sees that you have a medical alert bracelet, that’s kind of identifying that way, people might take a step back. I do think that a lot of people just don’t know and judge, cause we humans judge. (Dr. Vicki Wheelock)

Response 3: So it’s important to remember if you have Huntington’s disease, or anything else, that you are still a person, and you should be proud of yourself. If you’re going through something hard, it’s okay to tell people. It’s also important to remember that there are people in this world that are just not compassionate and not caring – those people don’t matter. Okay? It’s the people who care and are compassionate that matter. So, Raul, our beautiful model here, the front says the same thing as the back (showing his T-shirt). The back says, “I’m not drunk!!! I have Huntington’s disease.” He wears this all the time. You can tell he loves this shirt, right? His wife made them. It’s just a way for him, when he’s walking down to get his soda from the local 7-11 or Circle K, people will know what’s going on with him, and it’s also an opportunity for people to talk about it. There was an event we had, the JHD walk (referencing Help 4 HD’s JHD walk) and another shirt that his wife, Gracie, made, said “I have a broken heart because of Huntington’s,” and I was wearing it, and I went and got my family after the walk, and some lady was like, “What is that about?” So it was an opportunity for me to talk about it – of course, she talked to me in the bathroom – so it was an opportunity for me, though, to talk about Huntington’s and what it’s about. So I educated one more person, and now that person is going to be a little bit more caring and compassionate and think about things when she sees someone that may be a little bit different. (Lisa Mooney, with Raul, HD patient)

Response 4: I like to wear this shirt because when I’m at a sport game and they ask, “Do you got drugs?” or “Are you drunk?” or something…they make you mad ‘cause everywhere you go, they ask you that. But with this shirt, it’s better ‘cause they already know what’s wrong with you. (Raul)

Response 5: So, I just have to say when we found these shirts, we called Gracie, and I asked, ‘How many of those shirts can we buy?” ‘cause when Mike wears his shirt, people actually come up to us and ask, “Well, what is Huntington’s? Explain it to us.” So, people want to learn, so then you’re educating, and you’re cutting the whole stigma of what’s going on, people staring – so they are definitely my favorite shirts and are a part of my husband’s wardrobe. (Katie Jackson, president/CEO of Help 4 HD International)

 The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.

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