Making and Preserving Memories

An excerpt from my scrapbook of my mother holding me,
and her handwritten description of my first month.

As we embark on a new year, I think about the highlights of the past year.  What makes me grin, what am I proud of accomplishing, and what was meaningful to me? How can I memorialize these things so that I can enjoy them in the future?  I think it’s important to mark the passage of time, celebrate our successes, and keep our years from merging into each other without distinction.

When asked what one thing people would save in case of fire, they often say their photographs.  I think this is telling for how important memories are to us, and I think this is helpful information for us to proactively add joy and meaning to our lives. 

If we lose our photos, we will hopefully still have our memories.  But what if we lose them with MS disease progression or aging?  I may never reach a point in my life where I experience the extent of memory loss that people with Alzheimer’s and dementia experience.  Still I think it’s helpful to look at the extreme cases and learn from them. People with dementia are sometimes able to recoup some memories through music, stories, and photographs, and this can improve their quality of life. 

Creating Memory Triggers:  We can work to improve our memory, but I also think it serves us well to create memory triggers that help us retrieve memories.  I like to preserve memories physically through photographs and mentally through tying experiences to other things like music, people, food, and aromas. I try to enjoy the moment, feel it, and store it away in the subconscious. These are some ways I enhance my experiences and create memory cues:

• Take photographs. I love my camera and tripod attachment that will allow me to take a time delay photograph of everyone in the room – no need to have one person take the photograph and be left out of the photo.  Have someone take action shots of you doing things you love. These will help you remember how you felt while doing them.
• Put photos in an album either in hard copy or digital format. Just make sure they’re accessible to look at.  If you can add notes about the photo, all the better. 
• Pay attention to music. Buy the soundtrack to a movie you enjoyed. Make a playlist of the songs you heard for the first time this year or songs that are meaningful to you at this time in your life.  
• Journal about things you care about. This is a terrific way to remember your thoughts and how you felt at a specific time in your life. 
• Relish the taste of foods you love. Tell people in your life your favorite foods. It’s pretty incredible how people tend to remember other people’s favorite foods and create opportunities for you to enjoy them. 
• Take time to smell things and register them. Think about how a baby smells fresh from a bath, how a forest smells after a rain, or how baked goods smell fresh from the oven. Take a big whiff if you like something, and pause to appreciate it. 

Preserving my memories is not a solely selfish endeavor. My memories involve my friends and family, and compiling them is a gift for them to share with or without me. My mother kept a scrapbook for our family when I was young, and the stories she wrote to accompany photographs truly tell a lot more beyond the photographs. She’s been gone many years now, but seeing her thoughts preserved in her handwriting brings her back to us in a special way.  My sisters and I treasure them, and things we may have known at one time but hadn’t remembered are available to us now.

With MS, other neurological diseases, and just aging in general, cognition and memory can be something that declines.  The idea of losing my memory is scary, but it’s less so when I can actively do things that may improve my life now and for years to come.

Resources:

• Music & memory is an organization that provides iPods with personalized playlists to people with Alzheimer’s and dementia that improves those people’s quality of life. https://musicandmemory.org     
• StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, share and preserve the stories of our lives. They have an app that allows anyone to record their stories.  https://storycorps.org/ 

Fear, Gratitude & Hope Through Giving

I’ve learned a lot of lessons since Multiple Sclerosis became a part of my life. Among my attitude shifts that helped the most was losing the fear and focusing on gratitude and my ability to give.

When I was first diagnosed, my immediate fear was becoming disabled, losing my job, and losing my health insurance. We’re all different, and this was my biggest fear at the time. I attended the local MS self help group meeting where I met people with MS with varying levels of disability. I worried that they would think I didn’t belong at the meeting since I had no disability. I needn’t have worried.  They welcomed me with open arms and incredible empathy.

I introduced myself, told them a little about my story, and then expressed my biggest fear at the time. They immediately assured me it was all manageable, and they described their own experiences transitioning from working professional jobs to being unable to work. Truly it was a gift they gave me.  My biggest fear was something that they had experienced and gotten through, and they still lived full lives and had optimistic attitudes.  It was a huge relief to know that what worried me most was something that they had already dealt with and had advice for how to get through if that time ever comes for me.

I even met a quadriplegic woman in a fully assisted wheel chair whom I would have expected to judge me as not deserving of my anxiety, and she apologized for being at the meeting. She wanted me to know that her extreme MS progression was not the norm, and she wanted me to know there is hope. In what I judged to be my worst fear at the time was her reality. And she was worried about my fear. Her compassion as well as that of the rest of the group attendees touched me deeply then and still does now. It relieved my fear and made me believe that whatever might come would be manageable.

Along with the assurance that potential physical loss doesn’t need to be so scary, the people I met in the self help group helped me to see an appreciation for a life worth living even with full disability.

It was after reading the book, “29 Gifts” by Cami Walker, that my perspective shifted even more about my value in the world. Through practicing daily giving, I learned the wide range of gifts I’m able to provide that don’t depend on money, my job, or my mobility. It convinced me that even if MS takes all it can from me; I’ll still have value and an ability to contribute to society.

The opportunities to connect with people exist everywhere, and I think of connection as a gift I can give. An easy way to connect I've incorporated into my life is to slow down when I'm in a check out line at the store. As a society we tend to go on automatic pilot with a script where we each ask how the other is and respond we're good. I try to avoid being on autopilot, and I'll stop and talk to the person. I make eye contact, and I ask or comment on something other than the typical "how are you" script. I've noticed that people are visibly surprised and touched when they're treated as individuals.  Whether that person thinks of my attention to them is a gift or not doesn't matter. I intend it as a gift and a contribution to a better society, and that's my gift. 

Believing these small efforts and interactions are a contribution to a better world helps relieve my fear of becoming a burden. It gives me not only hope but an expectation that I can live a life worth living even if my body deteriorates.  No matter my level of ability, I’ll still have something to offer this world and not only the capacity but a justifiable right to enjoy living. That shift in belief helps me feel genuine gratitude for not only the abilities I continue to have but my capacity for giving to society in any physical condition. This belief not only helps ease the fear of the future and unknown, it enriches my life experience and builds relationships. Not too shabby. 

Responding To Comments That I Need To…(fill in the blank here)…

It personally bothers me when I read online articles telling people “What every person needs to do…”and presenting it as fact. They don’t know me, and what may work for the masses may not be appropriate for me. 

A simple example of this is kale.  Kale is very nutritious, has a lot of health benefits, and I feel good when I eat it. People with hypothyroidism or taking blood thinners need to avoid kale.  What’s good for many people is not good for every individual. 

It’s common for me to explain to people suggesting I take immune boosting products why I don’t. People think that because they’re successful avoiding or recovering from colds by taking immune boosting products that I should take them too.  I’ll nicely explain that I take a disease modifying drug to suppress my immune system because it works too well.  While I want to maximize my health, intentionally trying to trigger my immune system to start fighting isn’t good for me. I also explain that eating foods with anti-inflammatory properties does work well for me. We’re all different.

So while it bothers me to have someone tell me they have the answer to my problems, I respond to it the same way as if they’ve just made a suggestion.  I’ll honestly let them know whether I’ve already tried it, I’m doing it now, I’ve tried it and it didn’t work for me, or that I’ll look into it. I have a mental list of things I want to try but am not ready to do yet.  Some of them like doing yoga and seeing a naturopath took me years before I was ready to try them.  When I did, they were a huge benefit to me and I wished I’d tried them sooner. I followed up with the person who’d made a suggestion and thanked her.  I let her know I’d finally done it and loved it.  

Response Toolbox: I like to think of communication as a toolbox with tools that we use regularly and others that don’t come as naturally.  Sometimes we use our standard tool and it works great. Other times it takes three or four tries with different tools before we convey our message. I’ve found that the following methods have worked for me in response to comments that make me uncomfortable, that seem hurtful, or that I’m not up for answering in the moment.  You’re likely to have your own go-to methods that fit your personality.

• The blow off: If a comment is too ridiculous or mean and you don’t want to address it at all: pretend you didn’t hear it. Focus on something or someone else and continue the conversation.
• Incredulous silence:  If you want them to know it was inappropriate or hurtful, a paused look of shock can work. And move on to something else. 
• Honesty: Say their comment is hurtful or too personal for your comfort level and you’d rather not discuss it.  And move on to another topic.  
• The improvisational approach. Consider the comment as valid, build on it to the ridiculous and humorous conclusion, and laugh it off.  It works best if your response really is funny and doesn’t embarrass the person who made the initial comment.
• Find an advocate. Turn to a friendly face in the group and ask what they think about the topic through eye contact or explicit words. 
• Connect: Find the kernel of accuracy in what they’re saying, and comment on how that is true before explaining more about your experience.  
• Insight: Someone has said something completely foreign to anything you’ve thought before. Say that’s interesting and you’re going to think about it.
• The delayed response: Sometimes a comment sticks in my head long after the conversation is done. I allow myself permission to bring it up later after I’ve thought about it. There’s no time limit to letting someone know that something they said made an impression on you.
• Reschedule: If my energy is low or the event isn’t really conducive for the conversation and I really would like to discuss it another time, I’ll tell them. 
• Defer: I’ll tell them there is a lot of information on the web about this topic, and I’m still learning all the time.  There are some terrific websites and articles that might be able to explain it much better than I can.  If they’re interested in them, I’ll email them later.    
• Question: Repeat what you think their question was and ask them if your understanding is correct.  If not, they can clarify what they’re asking. Ask them to tell you more about why they’re asking.  Sometimes people ask leading questions because they want to tell you something.  Let them. 

Responding to questions or comments gets easier and more natural with practice. It’s also extremely rewarding to shift a draining and stressful situation to a rejuvenating moment of understanding and connection. 


For tips on MS conversations see my post "Talking About MS," and for additional perspective on this topic, see “What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments.

Talking About MS

Over the years, it’s gotten easier and easier for me to talk about my MS and respond to questions and comments. When I was newly diagnosed and didn’t understand how MS affects my body, I felt a little anxious when people would bring up the subject expecting me to have all the answers. And sometimes I was just too fatigued to have the energy for thoughtful discussion.

I went from knowing nothing about MS to being an expert in how MS affects me. It took a lot of time and effort, and it’s helped me to manage my health better and be able to respond to questions and comments. Now I think of MS conversations as more of an opportunity to connect than a list of pat responses.  

Lose the guilt:  I think a lot of my anxiety in these early conversations was due to me not wanting to accept that MS will affect my life. I wanted my will to override the physical restrictions MS was placing on me. It took time for me to fully accept that I can’t control or outsmart my body and do everything I used to do or want to do. While I was holding on to the feeling of inadequacy, I couldn’t discuss my MS without feeling a little shame or guilt.  And that mindset makes every conversation uncomfortable for all parties. Accepting I can control some things and not others allows me to talk about my MS with confidence. MS is not a character flaw; it’s a medical fact about how my body functions. 

Assess the situation: Think about the event and make a goal. Is it to get through the occasion? Is it to have fun and avoid drama? Is it to connect with certain people and have long, meaningful conversations? Each situation will lend itself to a different response.

Determine their motive: Why are they saying what they’re saying?  Are they trying to be mean and judgmental?  Or are they seeking assurance that you’re okay and they don’t need to worry about you?  There’s a difference.  A person genuinely trying to help deserves compassionate response.  On the other hand, a miserable person that enjoys drama and putting people down is always going to win at their game. They’re too good at it.  They’re not reading articles about how to get better at dealing with people they want to make feel bad.  If you don’t feel comfortable talking to these people, avoid them if you can.  Solicit someone to be with you that can help you cope, by either sticking up for you or diverting the conversation. Lashing out or trying to make the person feel hurt like you feel won’t help in the long run. 

Consider the source:  Is the challenge how that person interacts with you, or is it the topic that worries you? There’s a big difference. People that are consistently aggressive or love to put you down because they’re “just kidding” can be dealt with differently than people that are trying to be helpful but are pressing your buttons. 

I try to remember if I’ve ever had a good interaction with this person and what made it good.  It sometimes gives me some ideas for how to deal with future conversations. It’s also helpful to consider how informed this person is.  Even if they know a lot about MS, I know they don’t know my body or experience as well as I do.

Know yourself:  When we’re at the top of our game, we might be able to roll with an insensitive comment easier than when we’re tired, feeling overwhelmed, and experiencing MS symptoms. We all have certain things that make us uncomfortable. Knowing and accepting my triggers allows me to get through situations better.   

Stay true to yourself. Be you. Be the person you like being. The interactions I’ve regretted have been the ones where I felt baited to respond in a way that doesn’t align with my core. Don’t let another person’s comment dictate your mood or change how you feel about yourself. This can be tough when you’re feeling low or frustrated that you even have to deal with MS at all. The guidelines I aspire to may be different than yours, but I’ll include them here as an example:

• Be genuine and sincere.  Coming from a place of anger allows them to diminish your feelings with justification.  Coming from a place of curiosity and connection may not always succeed, but at least you can feel good about how you behaved in a stressful situation.
• Be funny. Be willing to laugh at your situation if you’re able, whether they’ve made the joke or you have.
• Lead by example. You teach people how to treat you by how you react and how you treat them.
• If you blow up, make amends when you can, and forgive yourself. 
• Remember it’s a conversation and not a pop quiz or Q&A. The focus doesn’t have to stay on you.  You don’t owe anyone a response to a question that makes you uncomfortable.
• Remember you don’t have to be perfect, and neither does anyone else.

Invite Connection: Some people are worried about saying the wrong thing, and they may need you to give them permission to talk about your MS.  When someone like this asks how you are, answer them honestly. And simply tell them that you’re happy to answer any questions they have. It lessens their anxiety and invites conversation. It also reduces the burden on you to figure out what they want to know.

Ask them what their experience with MS is. Have they known people with MS?  What’s their knowledge about it?  I didn’t know anything about MS when I was diagnosed, and I knew of one person socially that had MS. I’d seen her once with a walker and visibly struggling, and a year later saw her looking fine. Given my extremely limited knowledge of MS before I was diagnosed, I can relate to people that have no concept of MS or other chronic illnesses.  

I’m glad when people have an interest in learning more, and I want to encourage them. Being a safe person to ask questions builds compassion and empathy on both our parts. I’ve learned a lot and come to a greater understanding about myself and others through these MS conversations.  Even better, I’ve received a lot of support, felt good about myself, and enjoyed a LOT of laughs.

For tips for responding to questions, see my post "Responding To Comments That I Need To…(fill in the blank here)….," and for additional perspective on this topic, see “What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments.

My Heart Aches For The Parisians

The red sculpture is constructed of
324 bistro chairs and on display
 to commemorate 125 years since
the Eiffel Tower was built,
June 24, 1889.
The folding bistro chair is also
125 years old.

Yesterday Paris was the target of a mass terrorism attack. Tears fall periodically as I see headlines and read a few reports. I visited Paris last year, and I can imagine being there now. My heart aches for the Parisians and everyone closely affected. 

Events like these remind me we’re all extremely vulnerable. Logically I knew growing up that accidents, illness, and tragedy happen, but I don’t think I truly absorbed that knowledge until it touched me or people I related to personally.  My first jarring lesson was one day before my 17th birthday when I was in a head on car collision with combined impact exceeding 110 miles per hour. That accident was through no fault of our car or driver. The next lesson was my mother’s sudden death in a plane crash when I was 23. The NTSB found the probable cause of the crash to be an in-flight fire for an undetermined reason. The Columbine shooting was the first national event that personally rocked my security. Most of my youth I lived a few miles from the school, and my youngest sister was attending a neighboring high school at the time of the massacre. And then the terrorist attacks of 911 stunned us all. I didn’t know anyone who was personally harmed or lost a family member, but my heart ached for each individual affected. At the age of 38 my MS diagnosis shattered my belief that my healthy lifestyle protected me from disease. No longer did I just understand that death and injury could happen to anyone, I learned firsthand that we can do everything right but health is sometimes still beyond our control.

The attacks in Paris bring these feelings to the surface again. 

We’re all vulnerable. I’ve learned any amount of safety I feel is an illusion, and feeling safe allows me to go about my life with confidence.  However, there’s a strength I feel in accepting my vulnerability. I don’t want to be hardened. Protecting myself shields me from possible pain, yet it prevents me from experiencing greater connection with people. Anyone taking advantage of weakness reveals their true colors, not inadequacies on my part.

I’ll never succeed if the game is hatred and judgment. I can only focus on my strengths and values. I can contribute to society in a positive way and live with sincerity and acceptance. I choose vulnerability. 

Putting Myself Out There

MSAA invited me to be one of their guest bloggers, and they posted an introduction about me to their readers. MSAA focuses on enriching the quality of life of people affected by MS, and they do great work! Pretty cool!  See the post below and at MSAA at http://blog.mymsaa.org/putting-myself-out-there/

Putting Myself Out There
Originally Posted on October 19, 2015 by MSAA
By: Stacie Prada 

Having MS has frustrated me, limited me, knocked me down for a bit, and eventually released me from fears I had that kept me from doing certain things and from becoming someone I want to be.

Since being diagnosed with MS in 2008, things I have done for the first time include: yoga, trapeze, traveling abroad, ending a long term marriage, running for and being elected to public office, walking a marathon, and writing. I’m sure there are more, but thinking through my feelings and putting them to paper has been extremely therapeutic for me.

I figure I put so much effort into learning about myself, MS, and how I can live a fulfilling life that maybe sharing my experiences, inspirations and perspective might be helpful to someone else. Or at least it’s something I can refer to when I need to be reminded of things that helped me in the past that I’ve forgotten.

I’m inspired and motivated by people and ideas every day. Hearing what other people with MS have experienced and overcome helps me ease fears and build confidence that I will be able to deal with whatever cards life deals me. And while I put a lot of effort into my health by eating well, exercising, building relationships, sleeping, and contributing to society, I know that I’m not protected from MS disease progression. If MS limits my mobility and my ability to do things in the future, I want to feel secure in knowing I did all I could to slow my disease progression and build a safety net. In the end I believe it will be my attitude that dictates how well I adjust to any difficulties I may have.

It’s with this motivation that I hope to periodically share blog posts in this forum. My name is Stacie, I’m technically a middle aged woman although I feel young, I work full time, I have MS, and I generally feel good about life. Thank you for taking the time to read this!

Levels of MS Fatigue and How I Cope with Them

I never knew fatigue until I experienced it. Once I did, I realized how different it is from being tired.

I put a lot of effort into noticing when I start to feel fatigued so that I can do something before it gets out of hand. My goal is to manage it, prevent consequences to my daily activities, and preclude exacerbations.  I know fatigue may be experienced differently by other people, so I can only describe my experience as I’ve had so far. This description is non-scientific and for illustrative purposes only.

Level 0: No Fatigue at all.  This is especially exciting to notice after I’ve been fatigued. Realizing fatigue is gone is a glorious feeling. I might feel tired, but it is not fatigue.  Exercise and daily activities may make muscles sore or make me want to sleep, but the effort it takes to move is inconsequential. I will wake after sleeping through the night full of energy.

Level 1: There’s the mild level of fatigue where I don’t really notice it until I stop moving. Movements take more energy than they should. Exercising moderately, budgeting energy, and rest helps me recharge.

Level 2:  It’s a full body exhaustion that I can push through.  I know I’ll pay for it if I ignore it, so I take the evening off from household tasks. Take a B-12 shot or B supplements. Exercise moderately.  It’s counterintuitive, but exercise helps with fatigue.  I’ve found that an easy workout clears my head, helps me sleep, and leads to less fatigue later.  This is only true if my fatigue level when working out is less than Level 3. A good rule of thumb is that if after 5-10 minutes of exercise I still feel fatigued, I’ll stop. Some exercise is better than none.

Level 3: There’s the fatigue during the day when I push through a lesser level fatigue and suddenly realize I need to lie down immediately.  I can push through this, but there will definitely be consequences.  A price I’ve paid in the past is not being able to get out of bed the next day.  At this point only low level exercise like a mellow walk or yoga practice will help. Any rigorous exercise will increase my fatigue, and I may take longer to resume normal daily life.

Level 4: There’s the morning fatigue where I will myself to take a shower and need to be horizontal afterward in order to recuperate from the taxing effort it took to shower. When I feel this way, I’ve learned that taking the day off is necessary to allow me to resume my regular schedule the next day. Every movement feels like I’m trying to run through water up to my neck.

Level 5: This level of fatigue is where I can’t get out of bed. No amount of will can override this fatigue. It may take more than one day to recover from this, and it may be indicative of an exacerbation. I try to avoid this at all costs, and I will do what is necessary to recover because there really is no choice. The body overrides any will I may have. This extreme level of fatigue demands that I stay home, nap, limit energy exertion and practice pausing from life for the day.  See my post on Learning to Pause for more on this. 

Paying attention to the signals my body sends me and discerning between when I can continue or when I need to stop has been an art to learn. It requires constant adaptation and subjective assessment. I’ve been very fortunate that respecting my body’s signals and adapting my behavior has been successful for me so far.

Adapting to My Limitations and Doing a Marathon Anyway

I walked a full marathon. I didn't think I'd ever be able to say that. Before I was diagnosed with MS, doing a marathon was something out there that I thought I would do someday.  After my MS diagnosis it seemed like a goal I would have to let go.

It’s all the more amazing and rewarding to me now since I wrote in my Life List post I had accepted that doing a marathon was something I wouldn’t do in this life.  I thought marathons required that people run them, and my MS symptoms cause too many injuries when I run long distances. Surely 26.2 miles was out of the question now that I had MS.

Drop foot caused me to run off kilter and consistently brought on hip pain and injuries that took months of physical therapy to heal. When I complained that jogging hurt me but I wanted to do running events, my physical therapist responded, “You need to decide if it’s worth it.”  She was wise to let me know that it was a choice I was making. It was then that I realized running long distances wasn’t wise for me anymore.

I decided to focus on other activities I enjoyed including walking and hiking.  It was after a ten mile walk that a friend suggested I do the Portland Marathon where they encourage walkers to participate.  I was immediately excited and signed up in January for the October marathon. Two friends also signed up, and we put together and followed a marathon training program that would allow us to not only do the marathon, but train in a way that would have us prepared and able to enjoy the entire adventure.

We usually upped our distance one mile per week.  With 36 weeks to train, we had plenty of time to prepare.  Internet sources educated us on how to train, and that was terrific given I’m sure we would have over trained if we’d come up with our own training schedule.  We walked one long walk per week and did two to three other workouts each week of yoga, walking or gym cardio and weights.  Sometimes we were ambitious and would increase our miles more than one mile per week.  But we checked in with ourselves and each other throughout the journey to make sure we weren’t pushing ourselves too hard.  The threat of getting sick or injured was enough to keep our drive in check.

We did have some physical challenges to address along the way.  New shoes & socks, icing our ankles and feet after walking, coating our feet with Vaseline before walking, and staying hydrated helped us perform beyond our hopes.  We started our training hoping to finish the marathon in less than the eight hours required.  By race day we felt optimistic that maybe we could finish in six and a half hours.  By the end of the marathon we were ecstatic to finish 20 minutes earlier than we ever could have hoped!

I chalk our success up to pacing ourselves, allowing enough time to train, making steady progress, paying attention to our bodies’ needs, and sharing the journey with good friends. We promised ourselves we would make sure we had fun every step of the way, and we did!

It’s empowering to accomplish goals even when I do them differently than I’d imagined.  MS is full of adjusting expectations for the future, and modifying how I do something hasn’t diminished the enjoyment and sense of accomplishment.  It’s made me appreciate the experience all the more.

“What Not To Say To Someone With MS...": Connecting With People In Spite Of Odd Comments

Articles titled, “What you should never say…” are pervasive on the web.   It seems like these posts focus on how rude people can be, how they are the problem, and how they need to change what they’re doing. I think this perspective gives away our own responsibility to our relationships. It can victimize us in situations where intent wasn’t malicious, and we may have the power to view it in a way that’s helpful to us.

Yes people can be rude and I understand the intent of the articles is to educate people, but the critical lecture approach worries me. I think they can discourage conversation and connection. In my experience most people aren’t intentionally insensitive, they’re just uninformed. Good for them that they haven’t had that experience that would have taught them more about having a disease or other challenging experience.

I’d prefer to encourage the dialogue and allow for grace when people put their foot in their mouth. An inappropriate comment doesn’t have to end the conversation or begin an argument; it can be a starting point.  I also think that telling people what not to say without giving suggestions for what to do instead just silences people and makes them afraid to say anything.

We all have moments of vulnerability and strength. What may feel right as a response in one instance may not feel right in another. I think everyone should be allowed the opportunity to snap once in a while, and I hope my relationships can be at a point or grow to a point where it doesn’t break the relationship. If we consistently snap at people, come back with sarcastic responses or witty retorts, we’re telling people to stop talking to us. And that can harm us by severing relationships and isolating ourselves.

As someone who in the past has been well-intentioned but awkward to friends that are experiencing disease and loss, I sympathize with people who want to say something helpful but don’t know what to say. I look back and see how my reaction to a friend with cancer was concerned and caring but may have come across as pity given my tone and ignorance.

At times when I’d describe a symptom I was having, I’d become frustrated with someone who would always say to me, it’s nothing, it’ll be fine, or it’s not that bad. I finally asked, “Are you saying it’s nothing because you’re trying to make me feel better?”  It surprised me when the answer was yes.  It was a huge shift in the relationship once I understood this, and I wouldn’t have learned this if I hadn’t asked. It validated my experience instead of denying it, and it helped me feel compassion for those that care about me.  It’s easy to assume what those close to us are thinking, because we know them so well.  Checking in and allowing for surprises or alternate motives allows for more productive communication and understanding.

We can get really good at communicating and understanding our symptoms and disease, but we’ll always have relationships with people that don’t get it. I can get frustrated that they don’t have an amazing grasp of communication, understanding or compassion; or I can work on bridging the distance between us.

There may be times when it doesn’t feel worth the effort to talk about a comment made, correct a misconception, or learn more about what someone thinks. I try to think of communication as an investment in the relationship and an opportunity for me to learn something new or gain a new perspective.  

My unsolicited advice to the person with MS on the receiving end of comments or questions: Lead by example for the level of connection you want to have with this person.

You don’t owe anyone an answer for a question that makes you uncomfortable. Ask them why they ask. Or just say you don’t feel comfortable answering that. If it’s just not a good time, you can say you don’t feel like talking about it right now, you appreciate them asking, and you’d like to talk about it another time.

If you do want to connect after being offended or hurt by a comment, consider hearing what might be the person’s feelings behind the words. This might take asking questions about what they’ve said. A helpful non-confrontational response might be, “tell me more about why you think that.”

The table below shows comments said to me about symptoms or my MS with my initial reaction, what I try now to hear instead, and what I’ve said in response. 

The perceived behavior	Actual Comments  said to me	My Initial reaction	What I try to hear instead	What I’ll say
Deny	It’s nothing, you’re fine.	You don’t believe I have a problem.	I’m worried about you and I want you to be fine.  I’m trying to reassure myself that it’ll be fine.	Are you saying that because you’re trying to make me feel better? I appreciate that you care. I hope It’ll all be okay too.
Misconnect	I have that too! Everyone has that as they get older. It’s normal.	You don’t get it. It’s not normal. For me, it’s due to MS.	I have that, I think I understand what you’re going through and I’m trying to relate. I want you to be okay, and I want it to be normal.	It’s true that aging and other conditions can cause similar symptoms.  It’s not normal for people my age to have this, and it can be frustrating to have to deal with this while I’m still young.
Overreact	OMG, it’s so terrible!!!  Your life will never be the same. I feel so sorry for you…	You pity me but don’t want to understand me.	I’m scared for you, and I’ve never had to deal with something like this. I don’t know what I’d do if it was me.	Thank you for caring. This has been a big impact on me and I’m working on doing what I can to live the best life I can.
Silence	Avoidance or awkward pauses	You don’t want to talk about it and/or you don’t care about me.	I don’t know what to say and I’m afraid of saying the wrong thing. I’ll follow your lead.	As you’ve probably heard, I’ve been diagnosed with MS.  I want you to know it’s okay to ask questions if you like.
Diminish	But you look so good!	It must not be as bad as you’re portraying.	I don’t understand how you can look fine but have a serious disease. I thought sick people always looked sick.	I know, isn’t it weird how people who look healthy can be really sick? Invisible symptoms are so deceiving.
Fix it	I know what’s wrong with you, and if you would just (fill in the blank here with a cure, a diet, a medication, …) you’d get better.	You’re not doing enough to fix your disease. If you would do more, you’d be fine.	I care about you, and I heard of something that might cure you.  I really want you to be cured.	I really appreciate you caring about me and passing along information you think might help!  Please continue to pass along things you see (only say this if you mean it). I’ll look into it. I talked to my doctor about it, and his opinion was… I already have looked into it/tried it, and unfortunately it hasn’t held up in studies/ worked for me. There are a lot of ideas out there about what can help. Unfortunately there are a lot of people making a lot of money off sick people.
Pity or Condescension	How (long drawn out) ARE you?  With a head tilt, sad face, and exhaling tone.	You pity me and think my life is over.	I want to connect with you, but your experience is foreign to me and I don’t know another way to talk to you .	Thank you for asking. This has been a big impact on me and I’m working on adjusting.
Blame	Disease is really “dis-ease”.  If you fix your stress or life imbalance, you’ll heal yourself.	You caused your disease.	I’m trying to understand why you got sick, and I want to protect myself from getting sick. I want to help you get better.	That’s a concept that makes a lot of sense, and a lot of genetic and environmental factors contribute to things beyond our control. I think we do the best we can, but sometimes it’s just the luck of the draw.
Disbelief	Unless you fall down on the ground, I won’t believe you have MS.	I don’t believe you have MS.	My experience with friends with MS has been people very debilitated by their disease. You look fine and are more active than most people I know. Maybe you’ve been misdiagnosed.	There are four types of MS, and your friend probably had a very severe type of MS. I put a lot of effort into being healthy and into accommodating and preventing the symptoms I experience. I’m fortunate that it’s working for me so far.

To the person who doesn’t know what to say or is worried about saying the wrong thing.  Say more, not less. Come from a place of curiosity and concern. Allow for the person to not want to talk about it. Certain symptoms are embarrassing socially, and not everyone is willing, able or ready to share such personal information with everyone or maybe anyone yet. Leave space for them to come to you when they’re ready, if they’re ever ready.

Consider saying things like, “I care about you and am curious what your experience is. What’s it like? How do you feel about having MS. How are you doing? I’d like to be helpful, but I don’t know how to help you.”  

I think when we’re able to see beyond the words that are said and put effort into understanding each other’s feelings and perspectives, it can only help us feel supported and respected. And that makes us all healthier and more compassionate.

Pay It Forward: Talking To People Newly Diagnosed With MS

People newly diagnosed with MS are understandably rattled. I try to pay it forward with compassion and by sharing the insight I've gained over the years. It's personally rewarding and hopefully helpful to them.

I met with someone this week that was recently diagnosed with MS. She’s justifiably having a hard time, and I’m glad she sought out the NMSS self-help group. She contacted me and attended our group meeting. We agreed to have lunch following the meeting, and at the end of our long lunch she hugged me and said she felt better. This was the best gift she could have given me.

I was diagnosed seven years ago, and I remember how lost I felt. In 2008 there were web resources, but not the volume and patient interactive groups that exist today. I scoured the local library and web for information, but I felt like anything that I related to was few and far between.  Now the advice online is overwhelming in volume and the range of advice contradictory. I think having someone to talk to one-on-one that understands and is experiencing the same illness is useful.  I hope to help others when they ask.

I’ve spoken with newly diagnosed people a few times now, and I think it’s been helpful that when I talk to them I try to:

·         Listen to them. Ask them about their experience so far. Leave it open. They’ll focus on what’s important to them.

·         Validate their experience. When a person shifts from pre-diagnosis to post-diagnosis, everything is viewed through a new lense. And every relationship they have with each family member and friend is going to change.

·         Offer personal experience in similar situations, but acknowledge that their experience may be different.  Know that what helped me may not be what will help them.

·         Acknowledge that each case of MS is unique and because of that, I think each experience is paradoxically normal. MS is very confusing with a wide range of symptoms. Some symptoms are vague, and others are glaringly affecting. But none follow the cause and effect explanation that an injury provides. A twisted ankle may hurt, and you can conclude it’s sprained. There’s not usually a triggering event that explains fatigue, blindness, numbness, constipation, paralysis, or pain. It can come and go with no way for us to understand how we can stop it or prevent it next time.

·         Each person is on a journey. Not all information is useful or able to be absorbed when everything is new and overwhelming. Pick the most frustrating issue for them, and plant a seed of solution or hope.

·         Ask them as they reflect now if they had symptoms that came and went in the past. They may still be in the midst of an exacerbation, and feeling terrible, depressed, and scared is normal while still having an exacerbation. Especially when an MS diagnosis has come out of the blue. It’s frustrating that no one can predict how long the exacerbation will last, but if symptoms came and went in the past I’d guess that they will subside. I’m 99% confident that this person will feel better again.

·         Assure the person that they don’t need to worry about forever right now. Give it three months to see if symptoms improve. And if symptoms don’t improve in three months, they can figure out what to do then. There's no need to worry now about what may not be a problem in the future.

·         Let them know that life can be better after MS diagnosis. Children can learn to be more compassionate and independent. Relationships can grow to a healthier dynamic. Being forced to deal with the limitations MS demands can also lead to living a life worth loving.  Gratitude for what still is can make for more joy in life.  

·         Offer to be available in the future to talk. They may or may not call. But sometimes just knowing someone would be there is enough.

As I compile this list, I recognize I strive to do these things and I may be better at it sometimes than others. We’re all human.  I’m not the person I strive to be all the time, but I’m getting closer each day.  I may have more to add to this list as I grow and learn more, but this is a good start. I’d love to hear suggestions!

The Lasting Love of a Long Gone Mother

My mother's senior photo with flowers I know she'd love

May 21, 1994 – The day our mother suddenly left this world and our lives changed completely.  We became four newly motherless daughters at the ages of 27, 23, 20 and only nine years old. I still feel cheated that we didn’t get more time with her, but I can feel her loss now without being consumed by pain or resentment.

For a long time I thought people had a hard time with death, but I’ve since realized that people were likely reacting to my raw pain when they changed the subject.  Fortunately it’s been some time since I became able to talk about her with joy and ease in conversation that no longer makes people want to flee.

The biggest change I made that helped me to feel less pain for her absence on holidays and birthdays was to create new traditions. I chose to write letters to my sisters commemorating the occasion and honoring our mother.  The first letters are a bit tough to read because I can see I was suffering even though I had hope. Putting my thoughts in writing and sharing them with my sisters allowed me to feel more connected to them. Suffering alone left me stuck, but reaching out to others honestly and with vulnerability led to a path beyond the grief.

I’ll hear songs or experience something and think about how I wish I could share them with her. She’s been gone 21 years this month, and there’s been so much in our lives she missed. The lessons she taught us by the life she lived and the stories she told still come to mind frequently. When she’s in my dreams, it’s lovely to interact with her in new conversations.  With changes and accomplishments my sisters and I have, I like to think about what our mom would have thought. I know she’d be extremely proud of each of us, and I’m proud of the person she was and the legacy she left.

A lesson I learned when my mother died is one I try to live by still – make sure each of my relationships is in a place I’m okay with if one of us is gone suddenly. It doesn’t mean all of them are happy, but at least there isn’t something I would regret if I never see them again.

My mother died in an airplane crash. There were no goodbyes or preparations for her absence. But my relationship with my mother was in a place where we loved each other, we had fun together, and we were honest with each other.  As a mother she created that relationship dynamic, and for that I’m immensely grateful she left me with our relationship in a good place.