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.    

“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, Accessed 31, May 2020.

Emrich, Lisa. MS Blogging Community Index. Carnival of MS Bloggers. 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.