Thursday, June 18, 2020

Summer Fun at the Drive-In

As summer hits and pandemic-closed businesses open up in my area, it’s exciting to have my local drive-in theater open again.  I hadn’t been to a drive-in movie in decades, because staying up late and watching from my car didn’t hold a lot of appeal for me. I’m now a convert. The ability to get out of the house and do something social and special boosted my mood immensely.  

 

Everyone has different preferences and needs, but seeing a movie in a field from my own vehicle where I could create a comfortable environment for myself felt decadent. With blankets, pillows, and a borrowed exercise mat, the back of my car was perfect for a makeshift bed.  If my car wasn’t conducive and the weather was nice, I could have set up lawn chairs or the makeshift bed on the ground behind my car. I still would have been able to view and enjoy the movies.  

 

I’ve been to the drive-in twice this year so far, and the first time I sat in the front seat of my car.  I won’t do that again, since I barely lasted through the first film.  My MS makes my limbs cramp, and I need to be able to shift, stretch and sprawl to find comfort.  Being able to lie down for the films was relaxing and helped conserve my energy for a late night. Watching from inside my car was cozy even with the light rain outside.   It was such a fun outing that only seeing the early feature would be worth going. Staying for the late, late show (and staying awake) felt like a major accomplishment!


The website driveinmovie.com lists drive in theaters in the US, Canada and Australia. They also provide many tips for visiting a drive-in. I highly encourage seeing if any are near you or in a location conducive for a weekend trip.   

 

My biggest tips are to make your area comfortable for you, bring a battery-operated radio since they tend to use a radio frequency for the film’s audio rather than use speakers in the field, know where the bathroom is when you park, and bring a flashlight.  There’s not a bad spot in the lot for viewing the screen where I went, so reducing distance to amenities and lighting my path after dark are helpful.  And if mosquitos like you, make sure to bring some bug repellant.

 

If you have other issues that make going out difficult, do some research beforehand.  Look at their website, and contact the facility in advance to see if they can accommodate your needs. You can also ask around to see if anyone you know has been there who can give a first-hand description of what it was like.  If the unknowns really cause anxiety, ask a friend to go on a scouting mission and report back before you decide whether it’s something you’re up for doing.  People are really happy to share their experiences, especially if they know it will help someone else. 

 

If it works out for you to go to a drive-in, I hope you enjoy the experience as much as I did! It definitely merited inclusion in my #50at50yrs experiences. 


 

Resources: 

Drive-In Theaters  https://www.driveinmovie.com

Tips for Visiting a Drive-In https://www.driveinmovie.com/tips-for-going-to-drive-ins



Sunday, May 31, 2020

My Letter to Oprah in 2009

On March 17, 2009, I watched an episode of Oprah featuring Montel Williams and his experience with Multiple Sclerosis titled, “After the Diagnosis.” Given I worked full time, I didn’t record shows, and the episode would have aired on daytime television, I’m guessing I was home sick dealing with the flu, MS issues, or most likely both.  

I wrote a letter to Oprah the following day. 

The key points I was trying to make were to show appreciation for that episode and previous health-related episodes, and to encourage her to do more shows featuring regular people with MS. As such, I cringe a little that I shared so much about myself in the letter. That said, I grant myself grace and understand I wanted to explain why I believed my opinion had value.  

This is the letter in full. 
Thank you so much for focusing on Multiple Sclerosis yesterday.  I was very excited to hear Montel Williams share his experience as I have had difficulty finding positive role models with MS with whom I can relate.  I sympathize with his depression and difficulty adapting to the uncertainties of MS.  I also appreciate his openness in describing the disease and the symptoms he suffers.  His discussion surely helped many people to understand the hidden difficulties of MS.
I did finish watching the show yearning for advice from someone who has genuinely accepted the disease and found a positive outlook.  Montel’s depression left me unsure of his advice.  I wish for him joy and peace in this life despite his challenges.
Dr Oz was inspirational with his compassion and sound advice.  I see that without much guidance following diagnosis I naturally proceeded to follow his suggestion and consumed myself with learning about the disease.
My diagnosis of Multiple Sclerosis in June of 2008 completely blindsided me.  Even after my body became numb from the bra-line down for a few weeks, I still thought of myself as an extremely healthy 37 year old woman.  I exercise regularly, monitor my weight, eat organic food and locally grown produce, and try to balance life.
I sincerely thought I must have a pinched nerve.  At the time I actively participated in a gymnastics class each week, and despite fatigue I ran a 12K a few days after half my body numbed.  My diagnosis came quickly following what I have since learned to detect as an exacerbation.
Immediately following my diagnosis, I underwent steroid therapy that left me a wreck emotionally and kept me home from work.  I consider it happenstance that your program aired a week of shows focused on health.  Among them was the incredibly inspirational Kris Carr with liver cancer who affected me deeply with her attitude that we’re all dying, some of us just have more information.  Randy Pausch, with dignity, underscored the fact that it can always be worse.
I now live with on and off symptoms including pain in my hips and neck, fatigue, insomnia, memory difficulties, numbness and lack of coordination.  I take a disease modifying drug – a daily injection – to hopefully slow the progression of my MS.  I’ve given up the weekly gymnastics class, but I have a gym mat at home so I can stretch, do backbends, back walkovers and handstands.  I walk two miles with my husband each day.  On good days, I have to slow down to keep pace with him.  On bad days, he has to slow down to keep pace with me.  
I work full time in a demanding field and actively work at keeping a balanced state of mind.  I’m still in a quest to achieve balance and make sense of my new reality.  As such, I do hope you’ll consider a follow up program with average people coping with MS and specialists in the field.  
I appreciate the information on your website directing people to the National MS Society web page.  Televising the organization and its purpose would have been truly appreciated to support ongoing research for MS prevention and cures.  The organization also provides an amazing amount of support to MS patients, family and caregivers.  
Thank you, Oprah and staff, for your ongoing commitment to be a positive influence in our lives succeeds in making our lives better.
As I reflect on my own life and personal growth over the past twelve years since I was diagnosed with Multiple Sclerosis, I realize that I am part of an entire community creating what I yearned for and couldn’t find years ago. I wanted to learn from regular people with MS. Now there are many bloggers with MS sharing their experiences. See Carnival of MS Bloggers for an amazing single site compiled by Lisa Emrich with an MS Blogging Community indexproviding links to hundreds of them. The site shows how long it’s been since each site posted a new blog, so it’s helpful to see who is currently writing.  

I encourage anyone interested in writing and sharing to do so. Often, we have within ourselves the answers for what we need, and putting our thoughts in print can help us reveal our best path forward. Writing is therapeutic and empowering. Sharing allows us to learn from each other and build upon another person’s insight. It fosters a spirit of kinship that recognizes we experience our MS individually, yet we have a community of people who can relate, provide encouragement, and help keep us going.    


References:
“After the Diagnosis.” The Oprah Winfrey Show. Harpo Productions, Chicago, 17 Mar. 2009.

“Montel Williams Explains How He Deals With His Multiple Sclerosis - Part #2.avi.” YouTube, uploaded by wall6545, 7 December 2009, https://www.youtube.com/watch?v=X3f_SJRjqEo Accessed 31, May 2020.

Emrich, Lisa. MS Blogging Community Index. Carnival of MS Bloggers.
msbloggers.com/p/ms-blogging-community. Accessed 31, May 2020. 


Sunday, May 10, 2020

Living the Best I Can in a Changed World

My goal is to not just make it through this pandemic, but to enjoy this time. I don’t want to wait for things beyond my control to change to be able to be happy, have fun, and be fulfilled. 

If I wait for someday, I’ll miss now, and now may last a while.  It’s unsettling to live with uncertainty and be required to change my normal routines.  A lot of my routines have evolved over a long period of time to help keep me living as well as I do with Multiple Sclerosis. Uncertainty is a fact of life when living with MS, and adapting is a skill developed and constantly tested. Sometimes I’m faster at adjusting, and other times I’m a bit stubborn to see how I can adapt and lessen my suffering.   

It serves me well to acknowledge the change, accommodate the limitations, and adapt.  If I can figure out what I truly need in life to be happy and recognize why it matters to me, I can usually find a way to have it. It may not closely resemble the past, but a kernel of it can grow into something new that brings me joy.  

When adjusting to new limitations in my life, I succeed when I focus on what I can do instead of what I can’t.  When I learned I had food sensitivities, I had a list of foods to avoid.  Referring to that list while grocery shopping was frustrating.  It felt like punishment, and often I left the store very unsatisfied with my purchases.  When I created a list of foods that I could eat, shopping became a joy again, and I was much more successful keeping my food choices consistent with my dietary needs.  

I could focus on all of the closed stores and restricted activities, but it puts me in a mindset that doesn’t feel good.  I’m trying to focus on the things I can do. It brings me joy to live in a mindset of abundance and possibilities instead of scarcity and limitations.  

When I design my perfect day, it includes doing things that are productive, mentally stimulating and physically active. I want time to relax and recharge, and I want to spend time connecting with others. I want to eat nutritiously and indulge in something decadent. All of these things can be done in countless different ways spanning an infinite range of exertion. No matter what I’m doing specifically, I would feel love, I would laugh hard, and I would feel useful during my ideal day. These feelings are crucial to my happiness. I’ve learned that when I feel lacking in these emotions, putting a little effort into being kind to others usually leads to having all of these emotions fulfilled for me. The pandemic may require me to reach out virtually rather than in person, but I can do that.  

When I look at my plans through this lens, I’m better able to include things that will help me feel fulfilled.  If I can’t fit it all into one day, I’ll extend the time frame.  Often, I think of what the minimum is that I need to do in a day, weekend, week or month to be fulfilled.  When I have a ton of things to do, I’ll get most or all of them done.  When I have nothing that absolutely needs to be done and very few things on my radar, I might get almost nothing done in a day. Seriously, the length of time I can spend not moving is impressive. I could beat myself up for that, or I can think that I really needed the rest, the break or the escape.  

As I navigate a new reality where I can’t go everywhere I want to go, I can’t see people I want to see in person, and I still need to maintain my health, I need to create a long list of what I can do.  It’s necessary for my sanity and physical health to have options at the ready and be kind to myself. This pandemic is taking a lot from a lot of people, but I will do my best to live well in this changed world. 


Saturday, April 4, 2020

Keep the Piles Small & Reach Out in This Challenging Time

It’s tough right now living through a pandemic. I assume I’ll live through it, but many will not.  I appreciate hearing from people who are having a hard time, because I’m glad they’re expressing themselves.  I think the silent ones are sometimes the ones to worry about most.

When I think of everything I need to figure out, solve and do, it’s overwhelming: work while adapting to a state of emergency, isolate physically, help others in need, maintain my health, don’t catch COVID-19 and don’t have an MS relapse. A mantra I started using years ago comes to mind, “keep the piles small.”

I started saying it to myself after hearing a quote by Regina Brett:

“If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.”

A takeaway is that we’re more comfortable with the problems we know and more confident in our ability to live with them.

From that idea, I liked the visual of piles of problems.  When a pile of something is small, it’s easier to deal with it.  When it gets really large, it’s overwhelming. It can seem pointless to even try dealing with it, because it feels like any effort won’t accomplish enough to make a difference. 

When I’m thinking about everything that needs to be done and all of the barriers to doing them, it feels like I’m throwing every task, challenge and problem into one pile. I’m creating a mountain of a pile that feels insurmountable.  If I can split things up into small piles, then I can focus on what would help each one. 

It helps me to schedule time to deal with each issue and task. While everything may be constantly close to mind, it helps me to set things aside for moments at a time.  When I focus on what I can contribute instead of what I need, I’m improving my mental health and building connection. When the challenges come to the forefront of my thoughts, I’ll notice what I can do about it in that moment and note it to include later when I work on it again.   When it’s time to pick up that pile, I dive in and make progress where I can.  

One of the steps I use in each project I undertake is to take inventory of my resources.  What do I know and what do I need to research?  What equipment do I have and what do I need? Who has done this before, understands what needs to be done, or could share some wisdom?

This week, I realized that I have a full team of colleagues and friends who provide technical advice, friendship and moral support, but I felt like I needed one more voice.  I combed my mind for who could provide some wisdom and guidance.  I realized there was one more person available to me.  I contacted a former mentor who I haven’t connected with in a while.  This person was perfect for helping me think bigger, organize my thoughts and reinforce my core values.  While I started that conversation feeling very stressed, I ended it feeling inspired and energized to move forward.

Nothing had changed, yet I had changed, and progress was made. May you all have who and what you need as we move through this very stressful time.  Keep the piles small, reach out, and take good care. Remember you’re needed and you matter.  

Sunday, March 8, 2020

Coronavirus, Multiple Sclerosis, Health Fears & Lessons

With the current coronavirus spreading, wellness is at the forefront of the news.  I live in Washington state where the first confirmed cases and deaths from COVID-19 (the coronavirus) in the United States occurred. My neurologist’s office is in Kirkland, the epicenter of the US outbreak. We have a confirmed case in my community, and others are pending test results.  

I’m writing this on March 8, 2020, and news updates are frequent.  By the time I hit publish on this post, the status of the virus will have changed.  The statistics change often, but the consistent message I hear is this: the virus is spreading; if it hasn’t reached your town yet, it will at some point. 

The dynamics feel a lot like living with Multiple Sclerosis in general.  I can stay as well as I can with nutrition, therapies, activity and good hygiene, but I don’t have complete control over my health. I will do my best by cleaning surfaces often, washing my hands, using hand sanitizer and most difficult of all for me, not touching my mouth and eyes. I’m searching the internet for reliable and MS-specific guidance, and I am happy to see some good resources that answered my specific questions. I need to do everything anyone else should do to avoid having the virus reach any point of entry into my body, and for now keep taking my disease modifying therapy. I will also weigh whether to modify my plans as the virus spreads.  I can do all these preventative measures, and just like I might have a relapse due to MS, I still might get infected with coronavirus. 

It’s interesting to me to see others (who presumably don’t live with a chronic illness) react to the health threat.  I hope they don’t get infected, and I hope they endure and recover well if they do get infected.  Their fear and concern for getting sick make me feel like they’re experiencing what I often experience living with MS. The uncertainty is stressful.  

If they do get infected, I hope they aren’t blamed for not doing enough to avoid getting sick.  I doubt they will, and I think some people would think it’s ridiculous to blame a patient.  But when I liken this outbreak to having MS, I feel compelled to comment on the judgments I hear.  In trying to compliment me on living well with my MS, sometimes people will compare me to someone they know with MS.  They’ll comment that their friend, relative or neighbor isn’t doing very well, but they don’t take care of themselves. These are extremely well-meaning people who care, but I think they’re off-base.  That person who isn’t doing well might not be able to take better care of themselves, BECAUSE they are having too many health challenges.  And if they did have different health habits, there is no guarantee that they would be in better health.  Sure, the odds increase, but there are no guarantees.

The community conversations surrounding preparing for the virus outbreak before it widely affects my community are heartening.  I see offers to shop for and deliver groceries and supplies to our vulnerable friends and neighbors.  I see people creating resources and networks available for anyone who wishes to avoid being exposed or who is sick and needs assistance.  

I hope to use this as a lesson for myself to accept help if needed.  I reluctantly admit I’m a bit independent and prideful, and I don’t often let those outside my close circle know when I could use some help.  I’d rather do without and get through it.  I know this frustrates my friends and prevents them from feeling of use.  As I see my community rising to the occasion with this virus outbreak, I’m choosing to see this as an opportunity of connection.  We’re in this together, and I will work on remembering that when the coronavirus threat is over but my MS is still with me.  


For more information, I found the following to be helpful:

Monday, February 10, 2020

The Changes in Me Since My MS Diagnosis: Kinship & Nurturing My Well-Being

Experiencing life events and trauma can change a person.  We all experience life milestones and challenges, yet they are so personal and timed differently for each of us that how we react or change is never the same.  Losing a loved one or experiencing an illness is different when experienced as a child, a young adult or as an older adult.  Our expectations and life skills are different at each point in our life, and what may be life changing for one may be life affirming for another.  

As I reflect on how being diagnosed with Multiple Sclerosis and living with symptoms has affected me, it's difficult for me to separate it from everything else I’ve experienced in life.  Generally, I think that having MS accelerated my aging and life milestones, but there’s no way to know since it's the only life I live. I think many of my qualities stayed consistent or amplified with age.  There are two things though that rise to the top for changes I’ve noticed in myself since being diagnosed with MS. One is a deeper feeling of kinship, and the other is developing a lifestyle of nurturing my well-being and relationships.  

Feeling Kinship with Others: I feel a kinship with others at a level that I didn’t know I lacked before my own diagnosis.  When I see people with illnesses or medical devices, I see them now as someone I could be someday instead of someone separate from me with disabilities.  I see their mobility devices as signs of strength rather than weakness.  I’m embarrassed to admit it, but my old reaction was one of feeling a sadness and sometimes pity for them. After my MS diagnosis, I realized I was terrified of losing my mobility.  I learned with time how much my identity and self-worth were tied up with my ability to be independent and be active.  I also learned how much I still have to offer if I lose my ability to be mobile and independent.  

I have since met quite a few people who rely on assistive devices and are not able to do all they did when they were younger.  I’ve seen their illnesses lead to a progression from using a cane to walker to wheelchair.  I’ve seen their gradual yet persistent lessening of muscle tone and ability to care for themselves. A few of my friends have passed away, and in their final months I’ve seen their bodies wasted to a level of frailty that seemed inconceivable to still supporting a person with clear cognition. 

My internal reaction has evolved to a feeling of kinship and respect. My external reaction has grown to incorporate always asking before helping. With others, we often only know what we see or hear from them.  Our assumptions of what they want or need are very often mistaken.  When trying to be helpful, we often get it wrong. By moving a chair, we may be sabotaging their plan to use the chair as a means to get where they plan to be. In an effort to solve a problem we see, we aren’t aware of all of the other factors they consider in each decision they make.  A denied offer to help is not rude. I see now how important it is to always respect a person’s independence, allow them to choose whether to accept assistance and honor their wishes.  

Nurturing My Well-being & Relationships:
The other huge change in the me since my diagnosis is what I consider when deciding when to slow down, how I spend money, what I want to do in my life and with whom I want to spend my time.  I still work hard and honor my commitments, but I also consider my health needs daily. If MS symptoms are acting up, I’ll take a hard look at my obligations and see where I can shift, delegate or complete tasks differently than I might prefer.  It’s a very real decision for me to consider if pushing myself to keep working or being somewhere is worth potentially leading to an MS exacerbation and disability.  I used to think work needed to come before my well-being and that if I could keep going, I had to keep going.  This question is a good litmus test to help me make wise decisions for my health.  

With my finances, I balance planning for the future while enjoying the present. I assume there’s not going to always be time or ability later, and knowing I’m embracing living now helps me believe I will look back on my life knowing I made the best decisions for my happiness.  

I consistently give myself permission to try new things and enjoy life in every phase, because tomorrow my health may not allow me to do it. It’s possible I may get fitter or feel better than I do now, but right now I may also be the healthiest and most active I’ll ever be for the remainder of my life. I’ve learned to appreciate my body at both its most slender and curviest.

I now let having fun take priority over my reluctance to appear silly.  I’ll dance or sing when I might not have before.  Singing karaoke would have terrified me in the past, but I pushed myself and had a lot of fun.  Photographs haven’t always been flattering, but I push myself to see them as proof I am enjoying life.  

And then there are the people.  Struggling with accepting my chronic illness motivated me to share more with people and ask more of them.  I have relationships that have grown incredibly richer for my willingness to show vulnerability and accept help.  I feared depending on people or showing weakness would lead to losing relationships and being rejected.  I wasn’t wrong.  I did lose relationships, and it was difficult, but the bonds that developed and remain are solid and fulfilling.  I’ve found that the people who are good for us need to feel needed and trusted.  When we withhold portions of ourselves, we keep ourselves from experiencing how good a relationship can be.  I’m less likely to hide my flaws now, and it enriches my relationships.  It feels good to embrace the aspects of my being that are less than perfect and own all of me.  

It’s possible that with normal aging and without chronic illness I might have changed to tend to my own needs better and feel more connected to other people.  It’s also possible I might have lived a long life without ever needing to change or learn more about others.  Regardless, I’m happy with these changes, and I feel they help me cope with living with MS in a way that feels satisfying and right for me.  

Tuesday, January 14, 2020

Celebrating 50 at 50 Years #50at50yrs


I’m turning 50 this year, and I’m excited.  I have genuinely been looking forward to it for years.  No exaggeration.  

Approaching the half century mark is a big deal.  Anyone who lives to age 50 will have experienced many joys and challenges.  I think acknowledging the wonderful and terrible things we’ve enjoyed and endured in our lives is a worthwhile assignment. (See my post on My Life List.)

For me, living 50 years is meaningful, because it exceeds the number of years my mom and grandmother ever lived. It’s a life event I sometimes superstitiously wondered whether or not I would ever reach.  Add living with Multiple Sclerosis, and turning 50 feels like a major accomplishment! 

This year is my year to have 50 experiences of significance in my 50th year. They’ll include bucket list items, accomplishments and celebrations. I’ll share them and mark them with #50at50yrs on social media. If you’re turning 50 literally or in spirit, I invite you to join me in this challenge!

I’m filling my 50th year with travel, music, culture, learning and creating, and I’ll share it somewhere, somehow, at some point, by some form of communication or in-person interaction with everyone I care about in my life.  I hope it will enrich my life by making memories, furthering my life goals, and nurturing my relationships and soul. The excitement of planning, experiencing and reflecting on these life moments will be worth cherishing now and reminiscing upon in years to come.  Looking for things to celebrate will ensure I find them.  (See my post on Finding What I Seek.)

What I include can vary immensely, and the only requirement I’ve set is that it will be meaningful to me.  It can be something I’ve never done, or it can be something I’ve done before and never thought I’d do again. Some are projects I’ve wanted to undertake for years, and getting to a milestone marker for the project will make the cut. Some items are things I’d like to make part of my daily life, and doing them consistently will be a mini celebration each day in anticipation of an achievement to celebrate at the end of the year. Some will be pre-planned and on a list for things to do this year, or I may realize after I’ve done something that it deserves to be counted in my #50at50yrs.  

A fun coincidence for me is that Multiple Sclerosis Association of America is also celebrating 50 years in 2020. I’m excited to be a part of their year-long celebration where they’re featuring 50 clients in 50 weeks with #MSAA50. These clients will share why they support MSAA and/or the MS Community. Check it out, and stay tuned for more! 

#50at50yrs #MSAA50