Frostbite and MS: Building Resilience

One of my sisters is significantly younger than I am, and she’d never heard the story of my frostbite that occured over four decades ago. She knew I had it as a child, but it was only recently that it came up and I told her about my experience nine years before her birth. It was a story that was obvious to me, but it never occurred to me to tell her about it. Somehow it came up while we chatted, and I told her the full story.

At five years old I walked to school on the last day of class before winter break. Excited for our Christmas party, I carried a trash bag full of home popped popcorn in paper lunch bags for each student in my kindergarten class. We lived in Ontario, Canada, and I walked to school with another of my sisters three years my senior.

With the wind chill bringing the temperature to 20 below, my sister and I were bundled up with winter coats, mittens, and scarves for the cold walk to school. I carried the large bag of party treats in my right hand. On the way, I cried I was cold. By the time we arrived at school, my eight year old sister was carrying my bags and had given me her hat and scarf to wrap around my hands. I’m not sure how far or how long I carried the bag without moving my hand, but it was long enough to do irreversible damage.

My sister saw me wheeled out on a gurney from the school. I endured a month of soaking my hand daily for a half hour at a time in lukewarm water. For years I was convinced I soaked my hand in boiling water. With the severe frostbite on my hand, lukewarm water felt like it was boiling water. A large blister covered my right index finger from middle knuckle to fingernail. Twice doctors peeled an outer coating that grew and encapsulated my hand like a lobster shell to reveal raw skin beneath.

Years later I learned there was discussion of amputating my right index finger. They spared it, and I’m lucky I have full use of my hand. The bones grew in a way that stunted the length of my fingers and expanded the bone at the knuckles. My right hand is about ¾” shorter than my left.

People notice my hand doesn’t look normal, but rarely do they ask. Some people assume it has to do with my MS. Others are just shy and wonder. If they ask, I’m open about explaining why it looks odd. But mostly I don’t think about it. It’s just a part of the way I am. It’s a part of my history and experiences as well as my physical body. I don’t flaunt it, but I've stopped hiding it. For me it’s a lot like how I feel about having MS.

My hands are significantly different from
having frostbite. I was lucky that I was able to
avoid amputation & retain full use of my hands.

We all have scars. Some are emotional, and some are physical and visible. I’m not ashamed of having MS. I don’t rejoice in it, but I choose to embrace it and rejoice in life. I can’t cure myself of MS, but I can accept the limitations it places on me and maximize my joy and life experiences. My MS, like my malformed hand, is a part of who I am. And given I can’t change either of them, I’m okay with them. I choose to look at the bright side. Experiencing severe pain as a young child that couldn’t be avoided helped me become resilient. My resiliency is probably my strongest asset in living with MS and living through adversity in general. While I wouldn’t choose the conditions that taught me these life lessons and built up my resiliency, I appreciate that something good can come from them. 

Relationship Changes: How An MS Diagnosis Can Change Relationships

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character. 

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself. 

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me. 

I appreciate all of these relationships regardless of where they are today.  These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not. 

When Is It An MS Exacerbation?

Hands down the hardest thing for me to learn after being diagnosed with MS was discerning when I’m having an exacerbation (new MS disease activity where the immune system is attacking my nerve insulation), when it’s just existing symptoms acting up, and when it’s something not related to MS. Feeling confident in being able to tell the difference has been the biggest stress reducing skill I’ve learned, and it’s allowed me to relax when symptoms occur.

During the first few years after being diagnosed with MS, I couldn’t tell at any given moment if my immune system was acting up and I was in the midst of an exacerbation. Living like that is stressful and created a loop of worry that the stress would trigger an exacerbation. It took years of monitoring my health and reviewing the MRI scans with my neurologist to reach the tipping point where I feel I can distinguish between MS disease progression and life as usual.

My MRI scans showed I’d obviously had MS for years when I was diagnosed, but I only recalled fatigue as an issue. By paying attention to symptoms between MRI scans and then comparing how I felt to the scan results, I could make conclusions about what was or wasn’t an exacerbation. Having a couple of scans that didn’t show new MS lesions were extremely helpful, because then I could conclude that symptoms I’d felt during that time period were pseudo-exacerbations.

Each person with MS has different symptoms and disease activity, and each person will have different triggers. By sharing my mental checklist for self-diagnosis with examples, perhaps it will help you create your own:

1.    What are the symptoms? Have I had these symptoms before? What was the cause last time I had them? Would it make sense for it to be that again?

2.    Decide if it’s a pseudo-exacerbation where old symptoms are temporarily acting up:

a.    If it’s an old recurring symptom, is it occurring after a workout or at the end of the day?  Is it hot or cold out? Do I feel hot from anxiety, exertion, or the weather?

b.    Does it go away after a couple hours or by morning?

3.    Could it be something other than MS:

a.    Is a cold or flu making the rounds? Does anyone I know have it? Are my symptoms similar to theirs?

b.    Would an injury explain it? Any changes in medications or food lately?

c.    If the symptom isn’t usually MS related, what does Web MD say? 

4.    Consider it may be an exacerbation:

a.    Is my fatigue at an extreme level or more than usual for me?

b.    Is the symptom something I know to be typical for people with MS?

c.    Is it an old symptom for me that seems to be worse than in the past?

d.    Is it a new symptom for me, common for MS, and scary? I would immediately call my neurologist if I ever experience blindness or paralysis.

I’ll have old symptoms act up after a workout, when the weather is hot, after a long day, and sometimes after an alcoholic drink. Symptoms triggered by hot weather or a workout will usually subside after a couple hours of cooling down my body. Numbness from a long day or alcoholic drink (or both!) will be gone by morning. 

If it’s likely that it isn’t MS related, then I’ll take care of it myself or call my primary care provider. It’s important to take care of any infections quickly since they can lead to an exacerbation.

If it’s a new symptom that is typical for people with MS, I’ll call my neurologist and talk it through with him. My neurologist encourages me to call whenever I feel the need. I live two hours from the clinic, so I appreciate that he’ll talk to me over the phone. These conversations allay my concerns, confirm an exacerbation, or make it clear I need to see someone else to figure out the problem.

Life is extremely stressful when worrying an invisible disease could be active in my body at any time.  Doing some detective work on my health has been the best way to reduce stress, build confidence, and enjoy life. It takes a lot of effort, but it’s worth it!

New Year Goals and Designing My Life

My approach toward New Year resolutions is to just pause, think about things I want to accomplish or do in my life, or stop doing for that matter, and make a plan. It’s less about making resolutions than focusing my energy toward goals I’d like to achieve and living a life I’ll love. I think of it as designing my life and using a new year to motivate me to consider and organize my priorities. 

Articles online say people fail their New Year’s resolutions within a very short time into the New Year. I’d rather commit to change and effort than to a specific task-based resolution that isn’t always achievable when health issues or life obligations interfere. It’s also easy to get sidetracked. If I have a plan and a mechanism for remembering what I’d like to accomplish, I’m more likely to succeed.

This approach was very successful for me last year when I signed up for a marathon. I stretched a 20 week training plan to 36 weeks. It allowed for plenty of setbacks without the pressure of failing. It also helped keep it fun. See my post, “Adapting to My Limitations and Doing a Marathon Anyway.”

Considering my MS disease progression will likely include mobility issues in the future, I prioritize being active. I think about things I want to do in my lifetime that I will enjoy and that I may not be able to do if I lose my mobility. My goal is to try to do them sooner than later. If I don’t do some of these things, it won’t ruin me. But I want to be conscious of them and incorporate them into my life now if possible. I enjoy planning and doing them now, and I will enjoy them in the future while reminiscing about them. 

None of the changes I want to make are done in the first month of a new year. Instead, my intention is to prepare. I’m not setting up resolutions to do things perfectly all year long. I’m creating a plan with routines to make progress toward living a life I love while enjoying my life as it is today.

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.