I was invited to write an entry for Lifetime Care’s  winter newsletter, and I thought I would share it here.

In this time when the days get shorter and darkness comes earlier each day, we may
experience a growing wish to hibernate, to wrap ourselves in whatever is most
comfortable and step back a bit from the obligations of our lives. As grievers, the
cultural messages that this is a time of thanksgiving and the pressure to feel
gratitude may feel like a slap in the face of our deep sorrow. The expectation to be
of good cheer, to celebrate, to share joy and a spirit of love and giving may seem like
a heavy burden on our grieving selves. The next couple of months bring constant
reminders of upcoming holidays, which for grievers can be some of the most
difficult and challenging days of the year.

The first year after my husband died, I dreaded the holiday season, wished I could
just sleep through it, and did not know how I would make it through the days. My
family and I struggled to find some kind of balance that let us honor our loss, our
loved one and our need to find a way to continue on without their physical presence.
The first year was the hardest.

Maybe you’ve lost the one who helped you through sad times, the one who made the
best gravy, the one who knew how to time things so that meals were ready on time,
the grumpy one whose smile was so special when it came out, the one who
remembered the words to the songs, the one who told the corny jokes, the person
who took great delight in finding the perfect gifts, or the person who loved the hand
made gifts.

Maybe you’ve lost a person you loved who was part of your life and who
you are. When you have lost someone you love, someone who was a part of the
fabric of your life, it leaves a hole that hurts everyday. The holiday season with its
traditions and expectations has a way of sharpening that pain, making the feeling of
loss sharper and stronger.

Let me share some of the approaches that helped me and helped my family find our
way through the holiday season. The first step may seem selfish but serves to make
us better able to offer love and support to those around us. Take some time to think
about what you need on each of the upcoming holidays. You may need some time
alone, a solitary walk in nature, a different venue, a simpler celebration, or an ally
who can help you leave when you need to. There may be a tradition or two that are
essential. See if there is someone who can help you keep that tradition alive. If you
can, after you have thought about what you need, see if you can find a way to talk
with family or friends. Perhaps you can make a plan together for making it through
the upcoming season.

Think about making a formal gesture that acknowledges your loved one. If you
gather with others, there may be tension because it is so hard to know what to do. If
you can agree on something short and simple to do together, it releases the tension
and makes room for the feelings of shared loss. Some suggestions are: make a toast
to the life of your loved one, light a candle to represent their presence, pass
perennial bulbs to be planted in your loved one’s honor, ask each person to tell a
cherished story, or share your loved one’s favorite dish. One family I spoke with
takes the bottom branches from their Christmas tree to their loved one’s grave. Many
families in the first year after a loss choose to volunteer or find a way to be of
service to others.

The key is to plan ahead. Think about what you need, what you can change, what
needs to be continued. You don’t have to follow your plan when the day comes, but
thinking about it and talking it through with those you usually celebrate with helps.

I hope that you and your loved ones will find ways to make room for your grief, to
cherish each other, to honor loved ones who are no longer here and find your own
bit of peace through knowing that your sorrow reflects your love.

Getting Mourning and Milestones ready for publication and the tasks involved with getting the word out about the book led me to a CFS/ME crash. As I emerge slowly from the crash, I find myself thinking a lot about how CFS/ME and grief are related for me. Alan Wolfeldt talks about grief as our internal pain and sorrow and mourning as finding ways to share it and bring it out. It is by this active mourning that we begin to heal into our new futures.
CFS/ME and grief have a lot in common. Both bring fatigue, disorientation, slowed cognitive function, loss of identity, and sadness over loss. Both can bring questions about our capacity to function, questions about what if I had done this or that differently, or questions of why did this happen. In a way, having CFS/ME was a training ground for finding ways to live with purpose, meaning and joy while coping with the loss of my husband Jack. Both CFS/ME and Jack’s death challenged me to consciously look for strategies for living within a new set of painful limits and losses.
Writing a book and providing workshops to capture and share those strategies is for me a part of creating an identity that is more about life than the conditions, losses and sorrows that limit it. It is my way to push against feeling defined by grief or by CFS/ME. My experience and the stories I have heard both from grievers and those who struggle with CFS/ME is that our society is not skilled at dealing with either chronic invisible illness or grief over the death of a loved one. Loss is not a popular topic; grief is seen as something to get over; we are told that gratitude for what we still have or what we had should override sorrow.
Instead, I think that we need strategies to help us with the big and the small challenges, the moments and emotions that loss brings.
We need strategies for:
• feeding our souls,
• making it through the day,
• finding needed help,
• managing what is possible,
• finding ways to express what needs to be said,
• finding ways to know what needs to be said,
• connecting to others,
• embracing solitude,
• living with a changed reality,
• sharing loss,
• sharing joy,
• sharing sorrow,
• and sharing everyday moments.

We need strategies for the difficult days, for finding new ways to be part of our communities, for bridging the isolation of loss, for seeking and obtaining the help we need and for finding our own paths to healing. We are not going to get over our losses, but we may find ways to integrate them into a path forward.

I’ve been privileged to hear many personal stories of loss, loss of a loved one or a marriage, or the losses chronic illness brings. These stories have a lot in common. They are stories of feeling overwhelmed and walking around in a fog, having difficulty managing day to day and struggling with disorientation, deep sorrow, and persistent grief. For many mourners, it is as if the floor beneath their feet disappeared and the sense of who they are in the world was shaken apart.

Mourners often mention the sense of feeling abandoned by friends and family. Loved ones say: “Let me know if there is anything I can do.” “Anything you need, just ask.” But, help often doesn’t seem to be there when it is needed and over time, invitations seem to disappear.

I think our failure to connect with each other in sorrowful times is not a reflection of lack of love or caring. Rather, it comes from a perfect storm of grievers who are too overwhelmed to make the call or even to know what to ask for, and family and friends who don’t know what to do in the face of profound loss. Mourners fear they will be thought of as a burden. People who care about mourners fear intruding.

How can those who genuinely care reach out? My suggestion would be to offer your love and support in practical and specific ways over the long term. Even very small acts of connection or help with the tasks of daily living mean a great deal to a person who is experiencing the unmooring that accompanies any major loss. Here are some examples of things you might try:

• Phone just to check in. If there is no answer, leave a message saying you are thinking about them.
• Let them know: “I’ll be over to mow the grass on Tuesday.”
• Shovel the snow
• Say: I’ll be there on garbage day to get it to the curb. What time is good?”
• Ask if your friend or family member would like to talk and then listen
• Cook a little extra when you make a meal or a special dish and bring some over.
• Offer to pick the kids up from school on a specific day and bring them back after dinner.
• Offer to help with specific tasks on a given day. This could be anything from organizing paper work to cleaning, running errands together, picking up groceries or other necessities, or driving to an appointment.
• Continue to make invitations even though it may be a long time before the person coping with loss can manage to do dinner or lunch or coffee or attend a festive event.

These small things do matter. They connect us in times when isolation can be most painful and fear can keep us apart. Please share your own stories of ways people connected or ways you wished people would reach out to you at a time of loss and I will be delighted to add to this list in another post.

Thank you for visiting the website for Mourning and Milestones. I look forward to learning about your experiences with milestone days and to sharing excerpts from your stories in this space. I’ll also share lessons I learn from your stories and ideas that emerge from workshops and presentations.