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.