Saturday, September 29, 2018
Living with Multiple Sclerosis, I find I repeatedly need to accept my diagnosis and reality. I have moments where I feel great and totally at ease with my health, life and possible future decline. Other times I have symptoms ramp up, and frustration and fear can leave me rattled.
I’ve been living with my diagnosis ten years, have likely had MS at least another 15, and have accepted my MS diagnosis. Unfortunately, it’s not a one-time event or accomplishment. Friends who were diagnosed 20 and 30 years ago also periodically need to adapt to changes in health and abilities and accept things are different than they’ve ever been. I find the process of encountering challenges, adapting, and coming to a place of acceptance is a life skill that we use repeatedly. Sometimes it’s easier and feels seamless, while other times the challenge is harder and the process takes longer.
If I compare myself to people with terminal illnesses or living with disabilities far more limiting than my own current condition, I’m grateful that I am still active and quite capable. When I’m not feeling great and I compare myself to people that appear to be healthy, active and without any illness, I sometimes feel sorry for myself.
A book I once read described how a person with MS went to a rehabilitation center for people with all types of issues. The people who were para or quadriplegics due to injuries were deemed better off than people with MS, because their trauma and damage was done. The people with MS would continue to experience disease progression and decline in health and mobility at an unknown rate. I appreciated hearing that perspective, since the fear of the unknown and inability to prevent probable decline is an added mental burden to conquer. I’m thankful medications to slow MS progression exist, but I’m not arrogant enough to think it will prevent my decline. I am hopeful that myelin repairing medications will be developed and will someday be available to us. I hope this is in my lifetime, but I anticipate it is more likely to benefit those that come after me.
I’ll compare how I’m doing with others, and I’ll appreciate that my health is still highly manageable. I’ll be thankful that I’m able to do so much still given MS has done a lot of damage. To me, the result is that I have an appreciation for their struggles. I make it clear to others that I don’t know their hardships. I merely feel a kinship to them and wish them well.
I do feel like I’m experiencing bodily issues that may come with normal aging, but I have them 10-20 years younger and for a different reason. Often people will respond to an issue I’m having with, “You’re too young for that!” They’re right. Yes, I would be too young for that if I were a healthy person without a chronic illness. But I have MS, and that means I’m lucky my problems aren’t worse. I may actually have been staving off these issues longer than other people with MS have.
I think it's normal and even pretty difficult to avoid comparing ourselves to others. I think it's what we do with that mentally that matters. If I can build kinship and compassion with others instead of feeling resentment or self-pity, it builds a sense of gratitude and provides a reality check that helps me cope with my own condition. Feeling compassion for others can help us build compassion for ourselves, cope with MS, and accept our condition.
When I see others living seemingly without any health limitations, I try to remember that I too used to think I was as healthy as a person for my age could be. I was very active with early morning workouts, running competitive races, and doing gymnastics through my late thirties. In hindsight, I can see that I was living with MS for at least 15 years while experiencing relapses that I chalked up to normal aging, stress and health issues. This reminds me that people we know may be living with as yet undiagnosed conditions like heart disease, cancer and/or autoimmune diseases.
Whenever I think during a race or fitness class that doing this is harder for me than others and no one else knows what I’m going through, I try to remember that they may be living with and overcoming unseen challenges too. It reminds me to just do my own thing and push myself at a level right for me.
I think whether we think someone else’s condition would be better or worse than ours really depends on each of our levels of resiliency, biology, approach to life and sense of self. One person can feel depression and not make it through, while another can experience similar circumstances or diagnosis and find a greater sense of purpose. Boosting our coping strategies is necessary to live with and possibly thrive with chronic illness. Strong personal relationships and sense of place in social, community or religious organizations help us live beyond our own thoughts. A network of medical care providers with a counseling component can address our physical and mental health needs as they change. Finding a sense of purpose that extends beyond our physical or cognitive abilities can help us accept declining health as best as possible.
I think it’s great to look to others for suggestions, inspiration, motivation and connection, but I think it’s necessary to value our individual strengths, weaknesses and preferences in order to find our own path toward acceptance and purpose. It helps to look around, and it’s crucial to look within ourselves. Often our best path forward isn’t following someone else’s, it’s the one we create for ourselves.
Tuesday, September 25, 2018
This post is an essay my mother wrote while attending Evergreen College in the 1990's. Her wish for her daughters shared at the end of the essay is poignant and has come to fruition. That she is a part of so many of our precious memories makes this essay all the more touching to me.
|My Mother, Chris Ann|
Chris Ann Smith
September 26, 1946 – May 21, 1994
At times, each of us thirst for the warm pleasant remembering of things past that take us back to a time of innocence and security, a time of new family traditions, and an era of eager learning of all that surrounds our world. These keepsakes remembrances tucked in a corner of our souls are forever a part of us – memories that will never be duplicated, only rerun as a memorial to former times. For me, each of my recollections is accompanied by different feelings and sensations. As I reflect, it’s as if I’m reliving the experience through the emotional responses that escort each memory.
At two years old, blond, blue-eyed, thin and scrawny, I never walked when I could run; and, I was seldom speechless even if I didn’t have anything to say. My curiosity and inquisitiveness kept me busy exploring while my parents invariable chased me. One of my earliest memories is of food – blackberry pie to be specific. My taste buds react to the sugary sweetness of a freshly baked blackberry pie as I remember eating the whole pie without using silverware. I can still feel the enthusiasm and eagerness as I put my face in the middle of the juicy berries and proceeded to eat the entire pie and finish by licking the pie pan to a shine.
Last year, I asked my Dad to help me put this memory into a setting. He said, “That’s easy. I took you on the construction site with me and there was a pie shop around the corner. I’d buy you a pie for lunch.” “But why don’t I remember silverware?” He smiled and replied, “I never gave you a spoon. You’d eat too fast. Giving you just the pie always kept you busy so I could work.” To this day, I love any kind of berry pie, but I would never have the abandon to eat the pie the way I did when I was two years old.
At three years of age, independence, eager anticipation of an adventure, and power were experienced when I received my first “boat.” There was a lighthouse, lots of water, a salty taste in my mouth and a multitude of boats when I begged my father for my very own boat. I felt so grown-up as I climbed into my little square boat. My knees pulled up tight to my chest, I waved to everyone on the shore as my Dad pushed me out into the bay in my new special boat – a cardboard box. For a few minutes, I was the captain of my ship feeling special and very grown-up. It didn’t take long for my adventure to end as the cardboard absorbed the water and my great ship started filling with water. I don’t remember the rescue, but I’m sure someone brought me back to the sandy shore just before my “boat” went under.
Every child looks forward to the circus – I was no exception. My unforgettable adventure was a quest to see, hear and smell all the sights and sounds of this traveling menagerie. My seat in the Big Top was at the end of an aisle only a few rows up from the stage. My Dad sat next to me and next to him the other eight people in our group, but my seat was the best. The bench was hard as I shifted and fidgeted waiting for the beginning of the most exciting adventure in my entire life. Then, my eyes opened wide as the biggest and most colorful clown I’d ever seen started walking toward me. My smile was ear to ear as I held my breath hoping and wishing the clown would see me. He saw me. Fireworks went off as this childhood idol gave me a can of peanuts. These weren’t ordinary peanuts – these were CLOWN peanuts. I knew that nothing in my life would compare with this moment. My Dad took the special one-of-a-kind can and opened it for me. Of course, he took some peanuts first. Then, he passed this unique container of clown peanuts to the other people in our group. I protested saying that these were mine. The clown gave them to me. But, I was reprimanded and reminded to share, so I nervously and eagerly waited for my special peanuts to get back to me. A few moments later, my special world came to an end as I looked into the vacant, uninhabited can – not one clown peanut was left. I can still feel the emptiness inside. I’ve reminded my Dad about the special clown peanuts several times in the past few years.
Last year, I invited my Dad to the circus. I hadn’t been back since the clown peanut incident. My dad surprised and embarrassed me by asking a clown to come up to me and give me some peanuts. It was a cellophane package, not a can. But, this small package was “sent” to me with a lot of love and a plea never to mention the “clown peanuts” again.
Many of my special memories are of the times spent with my father. He loved exciting hobbies, and whenever possible, I became his shadow. Thoughts of boating, skiing, driving three-quarter midget race cars, go-carts, and flying antique airplanes awaken memories of a special childhood. Nothing was ordinary; the unusual was normal.
At ten years old, my first airplane ride with my father was unique. The butterflies in my stomach were working overtime as I anticipated my long-awaited flight. As I looked at the huge yellow biplane, I tried to act as if I knew what to do while I waited for the other pilots to prepare me for the flight. As my Dad pre-flighted and prepared the plane, I was given a parachute. Two pilots helped me put the cumbersome parachute over my shoulders and fasten the buckles. As they let go and stood back, I unceremoniously plopped down on the ground. The parachute must have weighed twice as much as me and standing was a challenge. As they laughed at me, they pulled me to my feet by the shoulder straps. A helmet and goggles were added next. Now, it was time to climb into the plane. One problem – I couldn’t move.
It took three men to pick me up and put me in the front cockpit of the plane. After shoulder straps and a seat belt were fastened, I was ready to start my adventure. I did have one question for my Dad though. I yelled back to him, “How do I use the parachute?” His reply, “Don’t worry about it. If anything happens, you’ll fall out of the chute.” He then started the engine. My confidence was a little shaky at this point, but the aerobatic flight filled with loops, hammerheads, rolls and stalls was the beginning of a lifelong love of flying.
Memories are a precious gift – a heritage from our family and friends. All my adventures are unique and priceless to me – some create special feelings and a smile, others bring tears and sadness. I hope my children have special remembrances that they can think about and share with others, whenever they need to feel good about themselves or just remember family and friends.
Thursday, September 13, 2018
When summer turns to fall, a sense of routine and normalcy seems to return to my life. Kids are back in school, my coworkers and I are done with big vacations, and we’re all ready to get back to work. This year it occurred to me to start reflecting on this year and planning for next year earlier than usual. I think this might be a terrific time of year to assess what I’ve accomplished, what I want to accomplish before year end, and what I want to accomplish in my life as a whole.
Much like the beginning of the school year with class plans and schedules, this is a natural time of year to approach as a check in point and beginning. I usually reflect on my life and create New Year’s resolutions in December and January. It works, but with the holidays and so many extra obligations and erratic scheduling, it’s sometimes difficult to find time. In September, there’s less of a deadline and more of an organic opportunity to check in.
My method is pretty structured. Okay, I’ll admit it’s probably extremely structured. Yours doesn’t need to be like mine at all. Just stopping for a moment and considering our lives periodically is helpful to prevent one year from blending into the next and time seeming to pass us by.
That said, I’ll share mine in hopes it spurs your own imagination for how you do it differently and might want to modify it.
I listed things I love and bring me purpose, and I’ve created a vision of what I want my life to be. These lists have stayed really consistent over many years. I organize my goals by categories of my life that are important to me. The categories are similar each year, but the goals I have within each category change a bit as I change. I use these goal items to decide what I’ll do each year to achieve these goals.
Things I love/Purpose:
- Be healthy, organized, prepared, and financially well-off.
- Enjoy life, make things easier where I can, and spend energy and time on things I love or enjoy.
- Build and enjoy relationships
- Feel useful, contribute to society.
- Be as healthy as I can be. Strong, fit, flexible and energetic.
- Have a home that is relaxing and company ready anytime.
- Explore interests and follow them.
- Be excellent with my career and enjoy it.
- Be financially responsible, and prepare for retirement and possible disability while enjoying today.
- Do things now that I want to do and that I may not be able to do in the future if I lose mobility.
- Cultivate good relationships with people I care about and care about me.
- Express myself creatively with photography, art and writing.
Life Categories & Goals:
- Health & Fitness: Improve strength and endurance. Be consistent with daily fitness, nutrition and self-care.
- Relationships: Call, visit, and connect.
- Finances: Be organized. Purge what doesn’t need to be kept.
- Home: Continue improvements, streamline things to make it easy to care for and keep clean.
- Creativity: Continue blog and cultivate writing skills, take photos and work on projects.
- Travel/Adventure: See family, explore new places and experiences.
- Career: Drive the office forward, accept new roles, cultivate working relationships and keep learning.
Plan: This gets pretty personal, so I’m not going to share my list as is. I will share some of the items on the list to give an idea of how I do it.
- Visit family, attend my high school reunion, and do a 14er hike.
- Write a monthly blog post.
- Take pictures and organize them.
- Work on kitchen remodel, try to finish before year end.
- Go to concerts, plays and museums.
- Maintain financial system, filing, purging and paying bills on time.
- Complete health insurance online health assessment to make sure my out of pocket is the minimum possible next year.
- See my neurologist and get MRIs annually. Take medications and supplements consistently.
- Have a daily stretching routine and stay active. Do a mix of short and long workouts weekly.
I think putting our goals on paper or in a computer document is a terrific way to see how much we change over the years and how much we don’t. The thought process of putting a task to things we value in life provides clarity for where we have control in our lives. For me, it shows how consistent my values and preferences have remained. It feels good to look at how far I’ve come and recognize how much my life has become what I envisioned years ago. It feels great to see that I’ve built a base that makes me happy and may allow me to do so much more in the years to come!
Monday, September 3, 2018
In the People Living with Multiple Sclerosis community, I’ve sensed an unwritten rule that you don’t show how well you’re doing when others are having a hard time. People are encouraging, but it seems that they want to help you when you’re not doing well. If you’re excelling, they may say good for you, but they’ll add what a hard time they’re having. They may say that there’s no way they could do it because MS limits the things they can do. I think I get it. I know it’s hard when I’m having a hard time, and I know sometimes it feels like it’s easier for other people. I’ll think that if they had my problem – or problems – that then they’d understand how hard it is for me.
I’m a champion for the truth that just because one person does something, it doesn’t mean everyone can do it. It doesn’t mean that those not doing more are lacking or failing.
It’s been a rough year for me stress-wise and physical ability-wise. I’ve had frustration and fear that ramped up my MS fatigue to a level where at my lowest I slept 24 hours in two days, and most of the rest of the time was still spent lying on the sofa. Another weekend when I rallied enough to attempt a walk outside, I realized only a half mile away from home that I may not be able to make it home. I seriously considered calling a friend to come pick me up and drive me home.
I worried that my physical abilities may never get better, and I feared this might be the most I’ll be able to do moving forward. It made me anxious that this might be my life now. I hoped that it would get better, and I told myself to just focus on each moment and each day. I told myself that maybe I just need to take it easy right now. That maintaining my work and relationships should be my focus, and I could come back to my regular fitness routine another day. That just because I’m not doing it now, it doesn’t mean I’m being lazy or negligent. That I’ll get back to it when I’m ready.
I firmly believe in explanations, not excuses. They often look like the same thing, but I think they’re different. For me, excuses are things we say to get out of doing something. Explanations are things we acknowledge and accommodate when they limit us from doing things we want to do. I want to be fit and active, and I want my body to be capable enough to not limit me from enjoying activities. Sometimes I’ve had people at the gym act as if me not trying harder is making excuses. I’m very clear with myself that I’m not making excuses. I WANT to be able to do everything. I’ve LEARNED that overdoing it will sabotage my ability to be as comprehensively healthy as I want to be. My biggest challenge has been learning moderation to know when to push myself and when to rest. This is an explanation, not an excuse.
Today my Facebook memories included a triathlon I did two years ago. I knew I wanted to get outside and do something active this weekend. As the last day in a three-day holiday weekend, today was the day. I put on a shirt from the first triathlon I did - to be clear I’ve done a total of two – and I committed to at least walking to the coffee shop.
I went farther and faster than my body has any right to given I’m coasting on a physical fitness level achieved from efforts made many, many months ago. It felt good to be outside with my blood pumping and legs moving again. It was tough, but doable. I paid attention to my body and accommodated it by alternating jogging with some walking breaks. It’s heartening that a few weekend warrior activities interspersed along the way have perhaps been enough to keep me from losing all fitness ability.
I know that one jog doesn’t mean I’m over this challenge. It’s one hour of one day pointing in the direction I want to go. What I wasn’t able to do earlier this year, I was able to do today. I’ll likely hit lows again. MS is unpredictable and uncontrollable. I manage my MS, but I’m not arrogant enough to think I’m controlling it. I’m doing what I think is best in each moment to give my body its’ best chance at achieving my health goals which are:
- Don’t have an MS relapse. This is a lofty goal, but paying attention to my body, recognizing triggers, and taking my disease-modifying medications helps. Not pushing myself further when I'm vulnerable has helped.
- Stay injury free, and do what it takes to recover (as much as possible) when I do get injured.
- Try not to get sick. It sounds a little funny saying that since I have a chronic illness, but I’m trying to not add more health conditions that I’ll need to live with either temporarily or permanently. I try to avoid getting a cold or flu, because it lasts longer than it does for others and it triggers other MS issues I have. I try to eat well and move enough to reduce the chance more ailments will be added to the list of things I need to cure or manage.
- Feel good. To me, this means keeping my weight within a healthy range, being strong enough to do things, and being active. Sure, I’d love to be more toned or look like I have in the past, but it’s not my primary goal, and it comes after my first three goals.
Beyond these goals, everything is a bonus. Over the course of this year so far, the choices I made to try to achieve these goals varied greatly. My ability level has ranged from extremely low to good enough to literally climb a mountain. I looked the same at both points. I think the only difference may have been my heart rate and expression.
This is what I really care about. This is what I spent many paragraphs describing and wandering among ideas. Someone else with my problems may seem better or worse than I do. Someone who looks great may be having a very difficult time. What looks easy usually isn’t. And what looks hard may not be as hard as it looks. We just don’t know anything about anybody’s experience unless we ask, they choose to tell us, and we believe them.