Sunday, September 26, 2021

Grief to Comfort Through the Years

Twenty years ago today, I wrote my first letter to my three sisters commemorating
my mom on her birthday.  My mother died suddenly at the age of 47 years 8 months with four daughters ages 20, 23 and 26 and one just shy of ten years old. Seven and a half years later, I still felt stuck in grief.  I wrote this letter while sitting at my mother’s gravesite on what would have been her 55th birthday. 

I worried how it would be received, but I wrote it and sent it anyway.  I’m so thankful I took that step.  It helped me with my grief, and I feel closer to each of my sisters than I did at that point in my life.  Today I feel able to fully experience sadness and joy for all my mom did and all she missed in a way that brings me comfort. 

It blows me away that this first letter was written 15 days after 9-11.  It was such a pivotal moment in history for our country and individuals personally, and it brought my grief to the surface for all who had suddenly lost their own loved one to a tragedy. When people die in an accident or incident, the news report how many people died.  The news doesn’t even begin to capture the pain, loss or recovery that lies ahead for many who are injured and left behind.


An excerpt from that first letter:

I thought coping meant behaving as if everything is fine.


Yet, the holidays always posed a distinct sadness. How could I enjoy Mother’s Day when I missed my own Mother so desperately?  How could I sufficiently remember and honor Mom’s birthday when it seems my chance is passed?  How can I make myself feel better when I don’t think I should be so incredibly upset anymore?  We’re always told that time heals all wounds.  So what’s wrong with me that after seven years, I’m still having trouble?  All my friends who are my age still have their parents.  And the friends that don’t, they still had their parents until they were a ripe old age.


It’s been 7½ years since her death, and I’m just now starting to feel like I’m allowed to ask for help in sorting through my feelings.  Just before Mother’s Day this year, a friend suggested I create a new tradition to celebrate holidays and special occasions.  I came up with writing letters to my sisters that remember and honor Mom for the incredible person she was.


I think this approach has made me feel a lot better.  I looked forward to today even though I knew the tears would flow freely.  I feel satisfied that I have appropriately honored Mom.  I hope we can learn from each other and provide support. 

After the September 11th tragedy, a counselor told me, “Talking about it doesn’t make you sad, what happened made you sad.”  That made me feel a lot better, because not talking about it hasn’t made me feel better either.  Maybe if we keep talking, someday we’ll feel a lot better about this than we do now.


I need my friends and family to know that Mom had a profound impact on my life.  Her death was not only a loss to us, it was a loss for the world.  She was an amazing woman who shouldn’t be forgotten.    


I did this at the suggestion of a friend to create a new tradition to celebrate holidays and special occasions.  I came up with writing letters to my sisters that remember and honor our Mom for the incredible person she was.


On what would be my mom’s 75th birthday, I reflect on that first letter and feel immense satisfaction that I’ve reached a point where I can celebrate all my mother did and all she missed in a way that’s comforting to me. In twenty years, I've written forty messages, one on our mom's birthday and one on Mother's Day. Some focus on loss and how much our mom missed in hers and our lives, and some focus on how much she accomplished in her short life.  They all share memories, celebrate our connection to each other, and reflect on how much our mom is a part of each of us. 

I think my letters or social media posts could be misconstrued as still having not dealt with my mom’s death, but I believe my posts reflect how hard it is and how far I’ve come. Losing a parent or anyone we love is a universal experience that almost everyone will have at some point in their lives. 


I share this in hopes that anyone struggling with grief will find a way to connect with others to navigate their journey to a place that brings comfort to them.  If this resonates with you, please, please know that you’re not alone.  It’s natural to retreat and close ourselves off from others when we hurt. In those moments, it is the act of reaching out, showing vulnerability, and asking for help that creates a path out of the darkness.  Not everyone is equipped to help, but many are willing.  Patience and persistence with others help. Professional help may be necessary.  It’s an act of strength to recognize things aren’t good and reach out for help. 


When I was hurting and felt alone, I was seeing a counselor. That was helpful, but taking the step to reach out to my family and friends was necessary to move beyond the pain to a new phase of healthy expression and connection.  I encourage all who are in the midst of loss and grief to reach out if you haven't already.  You may have it easier or harder than I did. It’s not a competition, and it’s not judgment to encourage self-care.  Do what’s good for you, and do whatever it takes to get where you’ll feel comfort. Know that even if nothing changes, perspective and love can change everything. 

People care, and while it's lonely, you’re not alone in your experience. You may be first among your peer group to deal with loss, and your role is to help them when they need help.  It's tough being first, it's not fair, and life doesn't care. People do care though.  They're the only way to find comfort and fulfillment and enjoy life. 

Post Script:

I’ve written a few posts over the years that focus on my mother’s influence with certain lessons that bring me comfort and guide me.  Check them out:

My Mother’s Lasting Influence:\

The act of supporting and comforting others is truly a thing to nurture and cherish. It lives beyond the moments we share and shapes our ability to persevere. My mother’s influence many years after her passing is proof for me.  She continues to guide my actions, she inspires me to be someone who gives love and support, and she encourages me to live a life of contribution where I’m able.  Her love endures as a fact of my existence and influences all I do.  


We All Have Hardships And Inspiration Is Everywhere

It’s beautiful to know we each have a unique experience and still we all share feelings about them that bind us together. To feel a kinship laced with understanding, respect and love for our fellow grievers, survivors, sufferers and thrivers is heartening and motivating to keep going when it’s tougher than usual. It can give us the strength we need to continue with our own hardships when others are in the midst of greater suffering.


The Lasting Love of a Long Gone Mother

A lesson I learned when my mother died is one I try to live by still – make sure each of my relationships is in a place I’m okay with if one of us is gone suddenly. It doesn’t mean all of them are happy, but at least there isn’t something I would regret if I never see them again.

Thursday, September 23, 2021

MS Relapses: An Evolution of Perspective

Multiple Sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.


Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse.  Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure. 


Year 5: Blog Post - Learning To Pause Helps Me Cope With MS Symptoms

I started blogging, and my lessons learned became more accessible for me to find later.  This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires.  


Year 6: Blog Post - I Feel Like A Rock Star!

I was declared “stable and in remission.”  I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not.  I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t.  I’d learned my body enough to know which symptoms were normal for me.  I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 


Year 8:  Blog Post - When is it An MS Exacerbation?

I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.


Year 10: Blog Posts - Managing MS Relapses

People with MS do not have complete control over whether or not they have a relapse.  If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible.  Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.


Year 13, Present Day: Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success.  I envy my naiveté thinking that without relapses I’d be safe from disease progression.  


The truth is nerves with old lesions can function for a while and give out much later.  Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion.  


The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary Progressive MS in ten years is based on a time when disease modifying medications didn’t exist.  Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough.  There are no guarantees, nor are there inevitable outcomes.  


With or without relapses, MS is with me and will shape my future.  What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way.  Take very good care, all. 



Links to posts mentioned: