My interview with Meagan Freeman: MS author, blogger and mom

I hope you’ll enjoy this interview with Meagan Freeman, a California writer and mother of six (!), who is living with MS. Her blog – Multiple Sclerosis, Motherhood and Other Traumatic Experiences – is one of my favorites, and her book The Hero of the Story is an inspiring read. Meagan writes with warmth and wisdom, informed by her experience as a mother with MS and a nurse practitioner. And I’m thrilled to share her thoughts on parenting and MS with you in this Mother’s Day Q & A.

I’m sure most people reading this are wondering: How on earth does she manage with six kids and a chronic illness like MS? So tell us, how DO you do it? 

As a mother of six, I have very little time for anything. Simply using the bathroom takes planning and precise timing, so I clearly did not have time for the diagnosis of multiple sclerosis. On August 24, 2009, my life changed dramatically when I heard those words. I was a 34-year-old emergency department registered nurse, a mother of five/stepmother of one, and a full-time student at the time of diagnosis. My husband is an emergency department physician, so he has an insane work schedule, as well. Who has time for this?? I have kids at home who need laundry done, dinner needs to be made…. and all I could think for so long was “Why me?” I quickly snapped out of that mindset. I am fortunate to have a tremendous support system, because I certainly could not do this alone. I was able to complete my Master’s program after diagnosis and become a nurse practitioner, and I worked for two years in that capacity. Between six kids and full-time work, however…my illness finally caught up to me last year. I had to call it quits, and now I am home full time with the kids. Working was not possible anymore due to illness progression, so that has been my largest adjustment since diagnosis, and I truly grieved for the loss of my career. But I must say that I also breathed a sigh of relief at having a bit more time to rest – at least while everyone is at school! Having a support system is essential for any parent with MS. It truly takes a village.

What have you told your children about your illness? How did you go about it? And why did you decide to share that information with them?

Initially, I told them very little, but as time has gone on, I have shared much more. I believe that many people are afraid to share information with children regarding illness, but this really isn’t the best approach. They aren’t as fragile as we might think, and often, the lack of information is more fear-provoking than having some concrete, factual information to work with. If we share age-appropriate facts with them about our illness, they will have a much better understanding of the disease, rather than creating a terrifying image in their minds. I had to create a different “speech” for each child due to the huge variety of ages in my house! I decided that I could not hide my illness, so I needed to share. I told them exactly what causes my illness, and that I was not going to die, but that I would have numbness, weakness, fatigue, and sometimes I would just not feel well. The older children got a much more detailed explanation.

How did they react? And how have they adjusted since?

At the time of my diagnosis, my kids ranged in age from one to eleven. They were so young that they really had no understanding of MS. I did my best to explain it, but I did so in a very age-appropriate manner. I tried to protect them from it as best I could. I did not feel that sharing this information with them at that time would benefit them, and may serve only to cause fear unnecessarily. I felt that I would share things as needed, as they occurred. In the seven years since the diagnosis, the kids have become much more aware as the disease has made itself known. It becomes much more difficult to hide! They have become so supportive, so kind and loving. If there is something positive to come from this, it is that my children have learned to show kindness and empathy.

Do you worry about your children getting MS? What fuels that fear? And how do you keep it in check? 

I understand that the statistical risk of my children getting MS is only slightly greater than that of the general population, but it still concerns me. Every parent worries about the health of their children, and anyone with a disabling condition with a genetic connection certainly worries about this risk. The risk is still low, but it seems to be slightly elevated, which is concerning. My maternal grandmother also had MS, and this clearly is something that adds to my concern. My grandmother had seven children, however; and none were diagnosed. This is another example of a case of learning to let go of unnecessary fears, uncontrollable situations and anxieties. I have learned to evaluate every situation: Can I control this? Is there something I can do to change this? If the answer is no, I let it go. Otherwise, the worrying does no good whatsoever, and actually harms me physically and psychologically. Easier said than done at times, though!

If you could offer one piece of advice to other parents with MS, what would it be?

If I had to offer one piece of advice it would be to learn to let go a bit, to stress a bit less, and trust a bit more. This is a very difficult task for people like myself: the planners, the organizers, the managers, the controllers, the deciders. The challenge is to bend and flow with the new circumstances of our lives. This is definitely not something that comes quickly or easily. But with time, focus, and patience maybe we can bend a little more instead of breaking. My mantra has become: “It could always be worse.” If we truly stop to think about it…it really could be.

In your book, you talk about the importance of leaving a legacy and writing a life story you can feel proud of. What do you hope your children (and future generations) will remember about you?

It is absolutely essential to me that my children remember these happy moments. The laughter, the smiles, the joy and the love. These are the moments that need to be remembered. These moments are the reason we are alive. I spent many of my younger years in a very career driven state, focused on education and job success. I have no regrets about that, but I have become much more aware of the simple things in life due to MS. I have started to search more for happiness than success;  fun more than money. I hope I am remembered as someone who faced things with some degree of courage and did not quit. I hope I am seen as someone who faced challenges head-on without fear, and refused to give in and give up. Most of all, I hope my husband and children felt loved beyond words, because that’s how much I love them. They are my world, and they are the reason I go on when I feel that I can’t possibly take another step.

You can follow Meagan on her blog at www.motherhoodandmultiplesclerosis.com or on Twitter @MotherhoodandMS.

The Hero of the Story

My favorite Freeman posts:

Caregiving isn’t a burden – and neither am I

Thirty years ago, I stood next to the young man I met in college and promised to love him no matter what.

In sickness and in health. Until death do us part.

It was an easy vow to make at the time. We were young and naive – and believed we were invincible.

Life has taught us otherwise.

When MS came knocking on our door, it was shocking. It disrupted our relationship and the dynamic in our home – like an unwelcome guest, with a lot of baggage. It affected my ability to work and to contribute to the family purse, creating a lopsided partnership.

He was now the provider. And I was the dependent. In my mind, a financial burden.

He never once complained about bearing that load – or made me feel bad for not contributing. I just didn’t feel like I was pulling my weight. And I worried about the future.

Would I become even more dependent on him – for personal care, as well as money?

But recent events have tempered that fear and changed my perspective. In the blink of an eye, my husband was suddenly unwell, and I was thrust into the role of caregiver. After three bowel surgeries – and nearly losing his life – he was dependent on me, for just about everything. Meals. Personal care. Household chores. Transportation to appointments.

The shoe was on the other foot, and he didn’t like it much.

“I feel like such a burden,” he said, one day. And that stopped me in my tracks. How could he possibly feel that way? I was just giving back.

It wasn’t his fault that he was sick, after all. And nor, I thought, was my own illness mine.

A moment of sudden clarity, in a difficult time.

So what did I learn from this experience?

That life can turn on a dime. It’s messy and unpredictable – for EVERYONE, not just for those of us who live with chronic illness. There are no guarantees. And we will ALL be vulnerable – and in need of help – for some reason, at some point in our lives.

And that doesn’t make us a burden. Just someone in need of more love and attention – who would happily return the favor, when the tables are turned.

In the context of a marriage, it’s the fulfillment of a promise. And even though we may not have understood the full import of our words when we said them, we meant what we said.

I will always be there for him. And he will always be there for me.

Until death do us part.

 

Interview with Faulty Wiring author Suzanne Robins

I was recently asked by MS blogger Meagan Freeman to answer a few questions about my book, Faulty Wiring: Living with Invisible MS. And with her permission, I’m reprinting my answers here. Meagan is a nurse practitioner and mother of six (!), who lives in California and was diagnosed with MS in 2009. I encourage you to check out her wonderful blog, Multiple Sclerosis, Motherhood and Other Traumatic Experiences, and her new book, The Hero of the Story.

You authored an amazing book, “Faulty Wiring: Living With Invisible MS” which I recently completed and enjoyed very much. Can you tell us about your book and what readers can expect? What inspired you to write it?

Frustration was my initial motivation, to be honest. I was having a hard time explaining my illness to other people, because most of my symptoms were invisible. Even some of my closest friends didn’t seem to “get” it – and I often came away from my conversations with them feeling like a fraud or a liar. So I did what I’ve done throughout my life to express myself and make sense of my experience: I decided to write about it.

This book is my attempt to explain what it’s like to live with the hidden impact of this disease. I describe the effects of anxiety, depression, bladder dysfunction, cognitive impairment and fatigue, and discuss some of the unique challenges these invisible symptoms present. I also share some of my greatest fears when I was diagnosed with MS and the lessons I have learned since then. It’s my hope that people who DON’T have MS will read it and say, “I had NO idea. But now, I understand what you’re going through.” And that people who DO have MS will read it and say, “Yes, that’s exactly what it feels like.”

Can you tell me a little about your diagnosis? What were your initial symptoms, and how are you doing now?

I was diagnosed in January 2002, so I’ve had MS for more than a decade now – and probably much longer than that. For years, I’d been struggling with insomnia. I couldn’t fall asleep, stay asleep or get back to sleep. And I was up and down to the washroom countless times each night with an urgent need to pee.

I had two young children at the time, who were both poor sleepers, so I attributed my sleep disruption to that. And my family physician thought my bladder problems were a consequence of childbirth and advised me to do some Kegel exercises. But the issues persisted and worsened to the point where I was barely sleeping at all – and that led to chronic fatigue, lowered mood, and irritability.

And then I started having panic attacks that would strike me out of the blue and were absolutely terrifying. Eventually, they became so frequent and severe that I was hospitalized. There, I was diagnosed with clinical depression, put on an antidepressant, and then released to the care of a psychiatrist, who I continued to see for several years. And my symptoms stabilized (though the bladder issues persisted).

Then, a few years later, I started having problems again – headaches, bouts of uncontrollable crying, dizzy spells and more panic attacks. The onset was so dramatic – and so inexplicable – that my psychiatrist thought there was something wrong with my medication. He actually sent it back to the manufacturer to have it tested! But the medication was fine and we were left with no explanation for why my symptoms had flared so suddenly.

But then, one side of my face went numb, and that signaled to my family doctor that there might be a neurological problem. She sent me to a neurologist, who ordered an MRI and it showed that I had several lesions on my brain. And that’s when I was diagnosed with MS.

So, I guess the moral of my story is that MS can sometimes present in unexpected ways. And its initial onset can be psychiatric – which may surprise some people, who are unaware of the link between MS and mental illness. Many psychiatric disorders, including depression, anxiety, panic attacks, bipolar disorder, and OCD occur more frequently in people with MS. And the suicide rate is also higher.

It’s important for patients AND physicians to be aware of this connection and to be vigilant, because the effects of these psychiatric problems can be devastating. It was the combination of sleep disruption and anxiety that most affected my ability to work. If someone had been able to link my psychiatric symptoms to an underlying neurological disorder sooner, I may not have sustained as much damage to my brain. But it didn’t occur to anyone that it could be MS. Even my psychiatrist was fooled!

My anxiety and depression are now under control, I no longer have any panic attacks, and my sleep has greatly improved with the recent addition of a 4,000 IU daily supplement of vitamin D. Fatigue and cognitive impairment are my greatest challenges, and my bladder problems have worsened. Otherwise, I’m doing well, with some numbness in my left hand and foot, but no mobility impairments.

What advice would you give to newly diagnosed patients?

I wish I had a magic formula for getting through an MS diagnosis. But I don’t think I handled my own particularly well. I was consumed by catastrophic thinking and worst-case scenarios. My first thought was, “OMG, I’m going to wind up in a wheelchair!” and I got stuck in that negative frame of mind.

But here I am, 13 years later, still walking…and running…and climbing stairs – without a mobility aid. In many ways, I’m doing better now than I was before my MS diagnosis. So all of that negative thinking was just wasted energy.

If I knew then, what I know now, I’d probably say to my newly diagnosed self: “Stop and take a breath. Don’t worry about things that may never come to pass.”

I think our minds automatically go to that dark place in the beginning, and we’re so frightened by the prospect of significant physical disability that we don’t entertain the possibility of a better outcome. Yes, the effects of MS can be devastating. And it is a legitimate concern. But it’s not an inevitable consequence. Many people do quite well.

So, I would tell them to live in the present and be hopeful. And then I would refer them to this post: Newly diagnosed with multiple sclerosis? You’ve Got This!

What and/or who inspires you the most? 

Without question, my Dad has been my greatest inspiration. He died a couple of years ago, but he taught me many lessons that I apply every day in living with MS. Like me, he was a storyteller. Not a writer, but a man with a gift for the spoken word, who could make you laugh – even in the midst of heartache. No matter what the situation, he could always find the humor in it. I have that ability too – and it has served me well in those moments when it probably makes more sense to sit down and cry. I think it’s funny when I find my cellphone in the fridge or catch myself applying hair gel to my armpits. I’m able to laugh at my silly mistakes or when things go wrong – and I have my Dad to thank for that.

SuzanneDad

I’ve been thinking about him a lot over the last few weeks, as I’ve dealt with a health crisis at home. He was a caregiver – first for my mother, and then for his second wife – for many years towards the end of his life. And I’ve recently assumed that role, as my husband recuperates from a series of bowel surgeries. It used to bother me when I’d ask my dad how he was doing and he’d say, “I’m just taking it one day at a time.” For a man so accustomed to looking on the bright side, it sounded to me like he was giving up on life. But I get it now. Full-time caregiving – like living with chronic illness – is an exhausting, and often overwhelming exercise. It can bury you, if you don’t break it into manageable chunks.

So now, when I’m feeling tired and discouraged, I think of him and hear his voice – urging me to keep going.

“Just one day at a time, Cutie Pie.”

What have you learned about yourself since being diagnosed? 

I’ve learned that I’m stronger, more resilient, more determined, more persistent, more disciplined, and more courageous than I realized. I think I had these qualities before, but I’ve never drawn on them to the extent that I have since being diagnosed. Chronic illness has a way of bringing out the best – and the worst – in you. I’ve let go of some of the traits that no longer serve me well – like perfectionism and my fear of failure – and have embraced those – like patience and flexibility – that help me to cope.

I keep a quotation on my desk to remind me that I have the grit to prevail:

In the midst of winter, I found there was, within me, an invincible summer.

– Albert Camus

When I read it on the days when I’m doing well, I take satisfaction in knowing that I’ve handled whatever life – and MS – has thrown my way. And on the days when I’m doing poorly, it encourages me to dig deep within myself to find that inner core of strength.

Can you tell me about your website, and what readers can expect to find there?

What I’ve tried to create through my website, Invisible Multiple Sclerosis, is a one-stop shop for information about MS. There are some terrific resources available on the web, but it can be time-consuming to find them – and often difficult to judge their credibility. By sifting through what’s out there, and assembling the most reliable information in one place, I’m trying to connect people with the information they need more quickly, so they don’t have to search through multiple sites.

On invisiblems.com, readers will find links to website information, online articles, blog posts, videos, podcasts and studies – organized by topic, so that it’s easier for them to zero in on the information they’re looking for. The site has resources for the newly diagnosed, and sections on fatigue, cognitive impairment, bowel and bladder problems, emotional changes, sleep disturbances, parenting, vitamin D and exercise. And in the coming months, I’ll be adding new information on caregiving, employment, stress management, CAM therapies and other MS symptoms, including pain, sexual dysfunction and spasticity.

The site also features my blog (Faulty Wiring), information about my book, lists of other books and websites I recommend, and some tips for managing MS.

The emphasis throughout is definitely on the invisible impact of MS, as the name of the site suggests, but I think anyone living with this illness will find the resources that I’ve included helpful. My Facebook page, Invisible Multiple Sclerosis, focuses more narrowly on the hidden symptoms of MS and the issues they present, but my website content is much broader than that, covering topics of interest to everyone.

I’m also very active on Twitter (@suzannemrobins), where I tweet exclusively about MS. So, if your readers are looking for a focused feed that will keep them up to date on the latest news and research on MS, and will point them to interesting blog posts and articles, they may want to follow me there. And I have some topic-specific MS boards on Pinterest at Invisible Multiple Sclerosis.

CoverSept12a

You’re damn right, I’m looking good!

Nothing is more annoying to those of us living with the invisible effects of chronic illness than to be told how great we’re looking, when we’re feeling like crap.

And it happens A LOT – usually at the tail end of a conversation that goes something like this:

“How are you doing?”

“Not great. I’m really tired. I’m not sleeping well, and my arms and legs feel so heavy.”

“I know. I’m tired too.”

“Not this kind of tired. Some days, I can’t even move or think straight. It feels like my body’s made of lead.”

“But you look SO good!”

And there you have it. The phrase we all know – and loathe. It doesn’t matter if you’re talking about fatigue, or depression, or pain, or cognitive problems. The response is almost always the same. You bear your soul and admit you’re really struggling. And the message you receive in return is: “I find that hard to believe.”

Perhaps, it’s well-intentioned. I don’t think they’re deliberately trying to be cruel. But it’s an expression of doubt, wrapped in a back-handed compliment, that nevertheless rankles and hurts. You feel like they’re calling you a liar and that you haven’t been heard.

But what if you chose to react differently, by interpreting these words as praise, not condemnation? A round of applause for all the things you’ve managed to do, in spite of your MS – and to cope with your MS.

After all…

  • YOU made the effort to get out of bed.
  • YOU lifted your arms to shampoo your hair.
  • YOU got dressed.
  • YOU put one foot in front of the other.
  • YOU managed to climb those stairs.
  • YOU tried your best to be productive.
  • YOU kept up with your kids.
  • YOU followed your doctor’s prescriptions.
  • YOU put your own needs first.
  • YOU paid attention to your diet.
  • YOU made it to the gym.
  • YOU overcame your fear of needles.
  • YOU found ways to manage stress.
  • YOU asked for help when it was needed.
  • YOU gave yourself permission to rest.
  • YOU took it in stride when you missed that appointment.
  • YOU didn’t cancel your plans.
  • YOU smiled when you didn’t feel like it.
  • YOU tried again.

Only YOU know what it takes to get through every day with this beast of an illness on your back. And YOU’RE the one who has CHOSEN to keep going when every cell in your body cries, “STOP!”

So the next time someone says, “But you look SO good,” resist that flare of irritation. Take a moment to give yourself a pat on the back for managing your illness so well. You’ve earned their praise. Take credit for your success. You’ve demonstrated strength and courage, you’ve modeled perseverance in the face of adversity, and you’ve maintained a semblance of normalcy because you’ve REFUSED to give up or give in.

While you may not feel like other people recognize it, YOU know that you have. And it’s a GOOD thing that you’re looking so well!