Establishing Safety Nets

Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner. 

Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps? 

There are safety nets for daily needs and long-term needs. They’re useful for health care, housing, finances, friendship, physical health, and mental well-being. 

Safety nets aren’t just for taking care of my needs; they’re also for taking care of the people and things relying on me. With colleagues, I share what I know and how I navigate issues. The more they know, the better they are for having backup plans if I’m not available temporarily or permanently. Mentoring and sharing help reduce stress for things I do with them and for them, and it helps all of us relax. 

When I was diagnosed with MS at almost 38 years old, I feared MS progression would make me unable to work, compromise my health insurance, and lead to immense difficulty surviving. The statistics said I would likely need mobility aids within ten years. Suggestions were to have a single-level home by the age of 55.

The nature of my MS lesions, the frequency of my MS exacerbations, and fear of the unknown led me to believe it was very likely I’d have difficulty walking as my MS progressed. 

That was 17 years ago. I’m nearing 55 years old, I work full time in a job that is the highest level of my career, and I live in a home with stairs that isn’t easily conducive to needing a mobility aid.  MS symptoms take effort to manage, but I still have full mobility.

I’ve decided in life to plan for the range of possibilities, but I don’t want to skip phases out of fear. That said, I do have vague backup plans. If tomorrow I woke up unable to walk independently, I could have a chair lift installed on the stairs pretty quickly. I have people who would be willing to help. 

When I was younger, I had a car with a manual transmission, and I could navigate the stick shift just fine. Then I hurt my Achilles, and recovery meant I had to keep off that foot.  I navigated work, home, and shopping on foot using crutches and a knee scooter.  I couldn’t drive my car anymore. Fortunately, I had access to a car with an automatic transmission, and I could still get to work. While it was a huge inconvenience, it was doable. It was temporary, but it was a terrific learning lesson for how much of my life relies on my mobility and energy level. Just hopping from the coffee maker to the sink, coffee beans, and mugs in different areas of the kitchen showed me how much walking my morning coffee routine required. 

I think about my routines with this in mind. Can I keep things together and reduce effort? How would I change things today if I knew I couldn’t walk tomorrow?

I’d have options and support for short-term accommodations, and I have options for adapting to long-term needs. Regularly monitoring how I’m doing will help me decide if and when I need to make a change at some point. 

Financial safety nets vary widely and depend on each person’s needs. 

One safety net I wish I’d set up is a long-term care insurance plan. Medicare doesn’t cover long-term care, but Medicaid does. To access Medicaid, a person needs to meet strict financial income and asset requirements. People I’ve known who had long-term care insurance were able to move to places where their needs could be met without a significant financial burden. 

I looked into it a few times, and the cost for me to get long-term care insurance now would be really expensive. Since I’ve already been diagnosed with a chronic illness, it would be tough to afford. If you don’t have a diagnosis yet and you’re able to access a long-term care plan, know that I regret not getting it. It would have been a safety net that hopefully I’ll never need, but it would have reduced the stress of planning for my future.

I’m grateful for the career change I made at age 30. I started a job where the paycheck required me to contribute to a retirement plan in addition to Social Security contributions. That requirement helped me establish a safety net that is still growing. Social security payments at full retirement age don’t come close to what I make working full time. Forced retirement plan contributions have allowed me to have the safety net of an income when I’m older that will cover my living expenses. 

Another safety net I’m working to create is covering expenses if I ever have a gap in health insurance.  If I leave the workforce willingly or unwillingly before I qualify for Medicare, health insurance will be a significant expense. I’ve started putting part of my paycheck into a deferred compensation plan. I don’t pay income taxes on it now, and in a few years, it will be available to help pay for health insurance and health care if I need it. It gives me options and eases my worries for a very expensive part of taking care of me.

These are just a few of the safety nets I work to establish and maintain. They’re not fun, they take time, effort, and money, and it’s really tough when money always seems tight.  When I was younger, I wouldn’t have thought I would be able to ever afford some of these options. It was slow going, and I often felt I started too late. As much as I could have done better planning, I started when I could, and it’s made a difference. They help me feel better prepared for the future, whatever it holds.

Being Cool

More than any other time of year, summer shares my not-so-secret secrets. I’m not as thin, flexible, or strong as I used to be. It’s easier to disguise and ignore in colder weather when clothing is bulkier and outdoor activities are less promising.

This time of year encourages reality checks for how I look, feel, what I’m able to do, and how things that used to be easy now require more effort. While natural aging is challenging, Multiple Sclerosis adds even more difficulty to living well in later years. 

I remember as a kid thinking my 50 to 60-year-old grandparents were really old. They weren’t active, and it wouldn’t have occurred to me that they could be. As I’ve watched baby boomers age, they’ve shown they can still be active. They’ve changed my expectations and hopes for myself for my later years. 

Just as each generation is changing expectations for what’s possible, I think the potential to live well with MS in later years is improving. This isn’t always true for each person, but as a whole, those of us living with MS today are doing better at each age than those with MS fifty, thirty, and even twenty years ago.  

For me, having MS is a burden to endure and a motivator to do what I can to combat its likely effects. At almost 55 years old, I’m hopeful that I’m still in the late summer of my life and still have time to delay decline. Each year I do well, I’m encouraged that I may keep doing well for a while. I know achieving that goal demands even more effort. 

If I let up, spasticity will tighten my limbs, limit mobility, and cause more pain than it already does. Medication helps, but stretching is mandatory for maintaining any flexibility. I’d think the way spasticity fires nerve messages and tightens muscles would lead to stronger limbs, but that hasn’t been my experience. It just tightens them, makes movement more difficult, and causes pain. 

It takes a lot of work to be where I’m at, but I still haven’t given up hope or effort for improvement. 

Thankfully, summer provides more opportunities to do things that improve my health. Produce is fresh and fleeting. Enjoy the flavor and nourishment while it lasts. Days are longer, and more sunlight improves my mood. I love being active outside, and the weather is conducive to outdoor activities. Friends are more likely to want to get together, and they support my well-being. 

Sometimes vanity can get in the way of making things easier or less stressful. Things that accommodate aging and MS-related issues are often bulky, less fashionable, and just don’t look cool. Similar to how opinions and expectations are changing for aging, I’d love it if we redefined what cool looks like.   

If needing accommodations for heat sensitivity, consider it’s cooler to be cool than it is to look cool. Lately I’ve noticed more spectators and athletes wearing cooling devices. They’re helping to change the stereotype that cooling vests and accessories are only for people who are weak or vulnerable. Cooling devices worn by athletes appear high-tech and something that helps high performers excel. Maybe with time, more people will see them as not only normal but desirable.  

With age, I’ve embraced comfortable shoes and safety equipment. I love my hiking poles for the stability they provide and stress they ease when I’m navigating trails. On a paddleboard, I’m fine wearing a bulky personal flotation device. I’d rather focus on balancing and enjoying the water than taking risks. 

I’m eager to let go of self-consciousness when it doesn’t support my goals while recognizing it's not easy to let go of vanity.  I’m hopeful comfort and happiness become the norm for being cool, and I'll advocate wherever I can.

Self-Advocacy: Challenges, Tips, Mentors and Allies

Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance.  Frustration grows when we meet opposition and live with pain and unmet needs. 

Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how. 

Cultural stereotypes breed internal barriers that are often met with very real external opposition. Some will see self-advocacy as being selfish, difficult, bothersome, or unreasonable. They’ll see it as a challenge or threat to them in some way. Just as that isn’t always true, it’s important to recognize that successful self-advocacy might not yield the results we seek. The burden falls on us to advocate for our needs, and we can’t control how others will respond. 

Tips for self-advocacy and being an ally: 

What might help could be learning more, speaking up, seeking advice, or realizing there are other options for treatment, relationships, and the future. Sometimes the fix is to chart a new course.

Soft skills like team-building, facilitation, communication, and compassion go a long way to navigating interactions for successful self-advocacy. The same skills are helpful for allies who want to help us navigate our challenges. 

My favorite and most helpful allies haven’t always given me what I asked for. They listened to me, made suggestions recognizing they might not be right, praised me for what I was doing, and encouraged me when needed. They may have seen what changes I needed before I did, but they didn’t push harder than I could accept at the time. 

I aim to emulate the friends, family, instructors, medical providers, coaches, bosses, and counselors who cared, believed me, understood they didn’t know everything, and helped me navigate through many challenges. They knew they couldn’t fix things for me, but they could be an ally and resource in my journey. 

Advocacy examples:

At fitness classes, I’ve learned to be clear with instructors about what my specific issues are, things I avoid, and areas that need extra attention. I’ve learned instructors who use boot camp methods of encouragement not only don’t work for me, they sabotage my health goals and MS symptom management needs. I will naturally push myself harder than I should, and it contributed to many MS exacerbations over many years before my MS diagnosis. It’s taken a lot of effort to right-size my fitness activities, monitor when I’m pushing enough or too much, and feel confident that I’m doing what’s right for my health. I’m always cautious with new fitness instructors and activities and want to see if we’re a good match. 

I need an instructor who will help me find the right level for my needs, not someone who will push me to my highest exertion level for the duration of a session. That’s when I have frustration, resentment, and feelings of inadequacy that don’t serve me. I make sure to advocate for myself by explaining my limitations and goals. Instructors who challenge me, show compassion, respect my limits, and praise me for my efforts make the cut. 

Medical care providers: At the neurologist’s office, I learned that I tried hard to be a good, likable patient, and I wasn’t being as firm or persistent as what would be helpful for my health. I brought a friend with me to my neurologist appointments a few times, and they were surprised by my behavior.  They knew professionally I was confident and clear about things. I wasn’t aware I was behaving timidly, but when pointed out I agreed. My friend encouraged me to use my professional skills at my doctor appointments, and it has helped me immensely. 

I was lucky to have a primary care provider who was AMAZING. Previously, I’d had doctors who dismissed issues I mentioned. I wanted things to be fine, and they supported my desire to dismiss issues as not worrisome. 

The one who was amazing? She would call and make appointments for me from the exam room. When suggested follow-up appointments were too much for me to take on immediately, she accepted my plan to wait with respect and compassion.

They praised me for my efforts when I was down on myself for not following my health plan perfectly.  My favorite and most helpful medical care professionals granted me grace.  They taught me I was reasonable and worthy, I didn’t need to expect perfection of myself, and I not only could but should express my needs. 

Physical Therapist: When they suggested a 30-minute per day strength and balance routine for me, I asked them to create one that was 15 minutes. I understood 30 minutes would be better, but I knew I was unlikely to do it consistently unless it was shorter. I didn’t enjoy it, and I preferred other activities. In this case, self-advocacy was pushing for what I was willing to do rather than what they thought I should do. 

Personal and Professional Relationships: I’m a fan of discussing goals for the day, week, and weekend. I’ll advocate for what I need and want, and I’ll ask them what they need and want. It helps to collaborate on a plan that serves us both. It’s taken me a lot of time and practice learning to be direct and discuss things. It can feel risky being open to rejection and judgment, and it’s been rewarding to have grown enough to be able to have tough discussions with friends, family, and my partner in healthy ways. 

At work, I’m open with what I do to accommodate my health needs, and I support my team when they need to address their own health and family needs. The rewards of supportive and flexible relationships individually and collectively far outweigh the inconveniences. 

I’m grateful for all of the mentors and advocates who have taught me with every interaction. They’ve improved my ability and willingness to advocate for myself, and they’ve shown me how I can be an ally and advocate for others. They may not have intended to make such a difference, but they did to me. 

Self-advocacy can change a life for the better. Collectively, we can improve the lives of many. 

The Joy of Imperfection

If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection.  

I was a very timid and quiet child. I feared making mistakes, looking dumb, and not doing things right. I tried to avoid any possibility that I’d do something to be ridiculed or judged negatively. 

I visibly shook throughout a presentation on candle-making to my fourth-grade class. It was torture to be the center of attention in a classroom. A high school presentation of a memorized poem wasn’t much better.  Neither my nine-year-old self nor my 15-year-old self would ever have imagined that someday I would frequently present with confidence to large groups. Young me would be amazed that I overcame my fear of public speaking. People who have only known me for the last 10 years would not believe I was ever that shy and fearful. 

Being diagnosed with Multiple Sclerosis was a pivotal moment in my life. It added loads of new worries, put my existing fears in perspective, and motivated me to live as well as possible regardless.

New fears were big ones. I feared losing physical mobility, memory, and cognitive clarity. I worried about losing the ability to work and afford health insurance. I became increasingly aware that things I want to do someday might not be possible as time progresses and my health likely declines. I worried about the worst that could happen, and I aimed to combat my worries with action. 

I feared MS would cloud my thinking and limit my ability to work and be good at my job. I was worried that misspeaking would be a sign of MS progression or stupidity. I started tracking how often people misspeak in meetings, presentations, and conversations. When I did, I noticed people say the wrong word or the opposite of what they mean A LOT. My hyperawareness taught me that smart, competent, and seemingly in perfect health people say the wrong word or the opposite of what they mean all the time. I’ve learned that when I misspeak, it’s how I react that matters. Knowing this allows me to relax, thank anyone for pointing out the mistake, correct myself, and roll with it. A benefit is it encourages group participation, and it shows others with less confidence that a person can be smart, good at what they do, and still make mistakes. This is the type of situation where I would have been embarrassed or insecure when I was younger. Now I embrace making mistakes and celebrate the benefits.

I feared asking dumb questions or being wrong, so I often didn’t ask many questions. I’d think about things a lot, soak up what I could, and learn a lot from books. In my professional life, I’ve experienced over and over again how much more I learn when I’m willing to offer my opinion and be told I’m wrong. Those are times when I learn something new, and I might not ever have known a different way of looking at it without being willing to be wrong. These are also moments where it’s how I react that matters. It’s become important to me to show that people can be good at what they do and also be wrong sometimes. I consider these instances to be good examples to others who might need to overcome this fear. 

I avoided looking silly to anyone other than my closest friends and loved ones. Being diagnosed with MS helped me see how things I thought would be judged as silly or foolish aren’t a bad thing. Singing karaoke was something I never thought I could do. When I did, it was fun and brought me closer to others. Letting fear limit how I have fun now seems a foolish decision.

Striving for perfection was an effort to avoid making mistakes. Embracing imperfection has been freeing and fulfilling. I know my younger self would have a hard time accepting the joy of imperfection, but I know she eventually did. 

Spring Presents

Without changes in routines or seasonal differences, it’s easy to lose track of time, day of the week, month, and even time of year. It’s good to have consistent healthy habits, but variety in schedule, activities, and environment helps us mark time.  

Consider driving a long stretch of highway. They have names for the experience of driving a distance, losing track of time, and being surprised not to remember it: highway hypnosis and white line fever. 

The more monotonous an experience, the less alert we’ll be, and we become more apt to operate on autopilot. It’s a small leap to compare this to our lives and how we experience time passing. The less we notice and the more we operate on autopilot, the more time can fly by. 

Suggestions for combatting highway hypnosis include keeping your brain engaged, changing your environment, and taking movement breaks. All of these suggestions can be used to add enjoyment to life, and spring presents an especially perfect season for using them.

Noticing budding leaves and blossoms delights me each spring. Years ago, I made a rule for myself to stop and smell the first blooming hyacinth I see. It’s my favorite-smelling flower, and it’s among the first to bloom in spring. Some years they’ve been in pots at grocery stores, others were at ground level in a friend’s garden or along a sidewalk, and one year they were on a hillside that required some effort to access. Each experience grounded me in my surroundings and helped me notice more flowers and warmer weather are to come. 

I eagerly await longer days each year, and springtime delights me with sunshine later in the day. Walking or jogging after work boosts my mood and helps with fitness. Short winter days can be hard to take, and I’m overjoyed when sunny evenings return.

I look forward to the local farmer’s market opening each spring for fresh produce, creative wares, and community gatherings. Frequently, impromptu conversations and well-wishes occur with people I haven’t seen in a while. It seems like we’ve all emerged from our winter hibernation, and it’s exciting to reconnect.  

Recognizing the unique specialness of each season is not only enjoyable, it helps me feel like I haven’t missed out, and I’m less likely to feel like I let time pass me by. 

Information on highway hypnosis:

Raypole, C. (2020, July 2). Highway hypnosis: Signs, causes, how to handle it. Healthline. https://www.healthline.com/health/highway-hypnosis   

Burdens Shared

March is MS awareness month, and it’s a good time to reflect on the lessons I’ve learned while navigating life with Multiple Sclerosis for 16 years. Of all of the lessons I’ve had to learn, the hardest has been accepting my MS is not just my problem. 

When I was diagnosed with MS, I firmly wanted to be able to deal with it myself. I saw it as my problem, and I didn’t want it to affect those around me. I saw it as solely my responsibility, and I thought it would be unfair for me to let it burden anyone else. 

I didn’t sign up for having MS, and neither did my friends, family, and colleagues. I thought I could shelter them from my hardships, and I thought that was the noble way to approach it. I strived to be independent and strong, and I thought being needy was a weakness. 

When it got to be too much, I sought help. Some rose to the occasion, and some resented my pleas for help. I was embarrassed to ask, and it was crushing being rejected. Those willing and able to provide healthy support were grateful I was finally asking for and accepting help. They have been essential to my well-being, and I’m grateful for them.

I’ve learned that sharing my experience and counting on people to help me is not a burden. They are components of healthy relationships. It takes strength and courage to let people in, and I’ve come a long way. I’m grateful when people ask and accept help with their challenges. 

I’ve learned to let people know how my MS may affect them, and most people are incredibly supportive and kind. I hope to lead by example for how we can be compassionate and understanding when life doesn’t go as planned. We all have challenges throughout our lives, and hardship grows when we try to go it alone. 

While this lesson has been hard earned, it’s also been the most rewarding. 

Fortifying Relationships

Some bonds can withstand extreme stress and grumpy behavior. Others falter with the slightest misstep or misunderstanding. 

Sometimes I wonder where I stand with people I haven’t seen in a while. After getting divorced, I worried I was portrayed in a way that led people to judge me in a way I thought was unfair and inaccurate. When encountering people I haven’t seen in a while, I’m not always sure if their opinion of me has changed.  I cherish those who light up when they see me. My fears and insecurities vanish immediately, my entire body relaxes, and I delight in the reunion. 

There are others who I’d never question where I stand. They’ve been consistent confidantes and cheerleaders. Our relationships have been fortified over many years to a level where I can’t imagine anything could break it. 

It’s easier to put effort into relationships when I feel good. Being generous and kind comes naturally when I’m less stressed or fatigued. When I don’t feel well, it’s harder to look beyond my own thoughts and feelings to see what’s going on with others.

Sometimes, the shift from gathering strength to interact to being energized and excited to connect comes quickly. It can be from their energy rubbing off on me, their kindness, or their acceptance of me without demanding anything else.

Sometimes it’s a reality check that causes a shift. Realizing a friend is going through their own hard times and could really use support reminds me to look beyond my own life. 

I’ve benefited and learned so much from many very wise and compassionate people who helped me through challenging times, and I try to pay it forward. Usually, it’s by example, but I’ve attempted to gather and share some highlights here. 

Make bids for connection:

• Offer to listen, invite them to share, and make it clear there’s no expectation or pressure.
• Check in by phone, text, or email, and let them know they don’t have to respond.
• If I’m genuinely there for them at all times, make sure they know it and believe me. 
• Be there for them when they reach out. 
• If you’re able and it feels genuine, light up when you see them.  

Consider conversation approaches:

• Ask open-ended questions that aren't leading. Avoid asking, “So you’re doing well?” Try “How are you doing?” If they’re not doing well, they won’t need to overcome an incorrect assumption before sharing whatever they’re comfortable sharing.
• Acknowledge that my own problems may be silly and aren’t as big as theirs, but they’re what I’m experiencing. Sometimes people are sick of dealing with their own issues and would like to hear what’s going on with you.
• Share without competing. Allude to how my experiences may be similar, but be clear that I understand their situation may be completely different. How I deal with similar issues or life events may or may not help them.
• Validate their experience before providing reassurance.  If the validation step is skipped, it can appear to be dismissing their feelings and reality.  
• If I get emotional, be clear that the topic is hard but I’m glad they’re sharing with me. 
• Be patient, and let the pauses linger.  What feels like an awkward pause can be received as patience.  Quiet moments help allow time to organize thoughts and gather the courage to share. 
• Avoid interrupting, it can disrupt their train of thought. If I do interrupt, I’ll try to bring the conversation back to the point where I interrupted them. 
• Don’t yuck someone else’s yum.  What works for one doesn’t for others. 
• Be okay with not agreeing with them and not understanding everything.  Trust they’re doing their best, and respect their decisions. 

Show appreciation:

• Appreciate the relationship, and tell them why.  Share how our relationship and times together help me and make my life better.  
• When people ask for help, let them know how much they’ve helped me in the past.  Share how being there for them is important to me. 

Follow up:

• Sometimes my reactions can be misconstrued or confusing. If I’m really absorbing something, I might stare and not say anything. It can sometimes lead people to reach conclusions that weren’t my intention.  If I realize later that this might have happened, I want to let them know that my reaction was sincere contemplation and not judgment. 
• If I perceive an interaction as difficult, follow up later.  Ask if it’s okay to bring up what happened and what I think I could have done differently.  See how they feel about it, and see if they agree or have other insight. If they don’t want to talk about it, reinforce the relationship and let the issue go. 

Each of these suggestions has one or many stories behind it. I cherish the friends, family, counselors, acquaintances, writers, bloggers, and leaders who’ve shared their wisdom and have helped me learn and grow. I needed it, and they’ve helped me immensely.