Keep Doing What You're Doing
Keep Doing What You’re Doing is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help me adapt, cope and rejoice in this adventure on earth.
Monday, May 8, 2023
Tuesday, March 28, 2023
Multiple Sclerosis Generations: From Diagnose & Adios to DMT to Crowdsource
- 1981, the year MRI scans became a tool to view images of MS lesions,
- 1993 when the first MS disease-modifying therapy (DMT) was approved for use, and
- 2010 when Facebook established the option to create groups and online support communities became more commonly accessible.
“A computer lottery will be used to distribute a limited supply of a newly approved drug for multiple sclerosis, angering and saddening patients who might be helped by the therapy.“The arrangement may leave four out of five of the eligible sufferers unable to obtain treatment when the drug goes on the market in October. Doctors and ethicists called that a reasonable compromise.”
Tuesday, February 21, 2023
Cultivating Kinship On Social Media
I’m grateful for individuals living and speaking their truth. Some have been sharing for decades, and some are just starting. I’m heartened by commenters who support with compassion and scroll past when things don’t speak to them. I’m inspired by so many who cheerlead and model respectful interactions with exceedingly tough topics. I hope we can hang on to the benefits of social media and lose the hurt it can cause. We need to protect our vulnerable peers, and I hope we can do this with compassion. We are better for the myriad of voices and experiences. Suffering alone is misery. Knowing we aren’t alone helps us get through the tough stuff.
It’s tough with any community where individuals are going through a lot personally. Some people deal with it by lashing out or blaming. It can be hurtful even when unintentional. I can give lots of examples I’ve experienced and seen, but I’ll share one of my earlier experiences that I think shows how people who understand MS can feel anger toward people who are doing their best.
Years ago, I agreed to be interviewed for the local newspaper. The article focused on how I have MS, am open with my health and was doing well professionally. The headline said I wasn’t going to let MS stop me. A comment on the article said I was doing a disservice to all people in the MS Community. She explained her husband had MS and continued working long after he should have left the workforce. It caused her a lot of stress and frustration, because he wasn’t accepting his limitations. That comment stung. I hadn’t written the story. I was interviewed, the reporter interpreted what I said, and they presented it in a way that was intended to be complimentary. I don’t fault them for that. That said, I didn’t say MS wouldn’t stop me, and it took much more time and brain space than I’d like to admit to accept her comment wasn’t about me. I felt compassion for her situation, but it hurt having her anger directed at me.
At some point the newspaper removed the comment. I’m not sure if it was a broad-brush removal of comments on old stories or specific to this comment, but I appreciate that it isn’t there anymore.
This experience helped me to shift how I look at social media interactions. When receiving comments, I consider the following:
- Are they disruptors pushing an agenda or are they genuinely trying to learn?
- Can I show compassion for them while maintaining my own wellbeing?
- What can I learn from them?
- Is the comment about me or them?
- Does the comment warrant a response?
- Sometimes a lack of a response is more effective than engaging.
- Remember comments can be deleted on some platforms.
When commenting on other people’s posts, I consider these questions and perspectives:
- Does it apply to me? Do I have anything useful to provide?
- Why do I feel compelled to react or comment? Am I being supportive?
- Is my response about me or about their experience?
- Am I staying on point for what they posted, and is it helpful?
- Remember each person has a different experience, and what’s true for one is not true for all.
We all learn different lessons at different times. Things I needed to learn when I was newly diagnosed differ from what I need to learn today and what I’ll need to learn in the coming years. I see newly diagnosed people expressing where they are in their health journey, and I try to meet them where they are. Usually it’s just listening and validating their experience.
Some comments can be aggressive, cruel and scary. Others can validate and lift us up. The more we engage respectfully and compassionately, the less scary the internet may become. Cultivating kinship and community helps us individually and collectively. The MS Community is 2.8 million people, and the number of people who care for or about us is exponentially larger. We can make a difference.
Sunday, February 19, 2023
Holding On & Letting Go
A dear friend of mine is nearing the end of her earthly life. I’m grieving her pending departure, and I’m immensely grateful to have known and loved her.
As this year began, I intended to center myself with “Letting Go” as my theme for 2023. I envisioned letting go of belongings and beliefs that no longer serve me. Things like clothes, knick-knacks, and the hurts some people have caused me. I didn’t foresee letting go of people I love.
I will cling tightly to her friendship, lessons she taught me, and memories of time together. I will fiercely hang on to her with complete support and love. I aim to experience this time fully in all its bittersweet glory.
I know this also includes letting her go and fully supporting her in letting go. I aim to respect, accept and advocate as she wishes. I don’t want to make it harder for her, and I’ll try to not make our interactions about losing her. I’ll attempt to couch my sadness with appreciation. She lived gorgeously and supportively, and she will continue to live on long after her passing in me and many, many others.
As I cherish and celebrate her, I’ll share she was among the first people I met with Multiple Sclerosis almost 15 years ago when I was newly diagnosed with MS. She was one of the people I needed to navigate my own health challenges. She was a mentor, confidante and cheerleader. In her I saw resiliency, humor, love and acknowledgment for how hard MS can be. She gave me hope and a model to follow.
She was diagnosed prior to MS disease modifying medications. She volunteered and was selected for a lottery to use one of the first medications available in studies. Today many people with MS live with fewer relapses and less disease progression due to people like my friend who took the chance. Each generation has a better prognosis due to the collective efforts of the generations before them.
My friend spearheaded creation of the local MS Self-Help group where I met her. I watched her lead meetings with compassion, share insight, suggest options, and facilitate conversations with grace to ensure all attendees had their needs met. Her patience is unyielding and truly inspirational.
Today, I live better for the wisdom she imparted and leadership she quietly and compassionately provided. I’m better for knowing her, and I hold tightly to all she means to me. She is securely and forever held in my heart and spirit.
Saturday, January 21, 2023
I’m Still a Rock Star…And Yet
I wrote a blog post in 2014 I Feel Like A Rock Star! where I described learning my Multiple Sclerosis lesions were all two or more years old. This led to me proclaiming I felt like a Rock Star.
- Dealing with Insurance Denials: A Necessary Skill When Living With a Chronic Illness, October 3, 2017
- Necessary Medication and Politics: The Devastation Falls on Patients. January 30, 2018
- Necessary Medications and Politics: Part 2, February 28, 2018
- Prescription Coverage Drama and Trauma: It Breaks Me at Times, August 29, 2019
- Creating Some Order in the Medical Billing Chaos, September 11, 2016
Sunday, January 15, 2023
Tracking Symptoms & Treatments with Compassion & Encouragement
Sunday, December 18, 2022
A Season of Convergence
- Know what I need and want, what’s good for me, and what aligns with my goals.
- Batch things I need to do with things I want to do.
- Look for ways to merge my needs and wants with things that are good for me, align with my goals and bring me happiness.
- Be clear in each moment what’s important and let everything else fade away.
- Have fun!