One Patient's Positive Perspectives

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Quiet moments to read for pleasure

Grieving can be intentional.  After the loss of my father in early July, I have made a point to find a few quiet moments to sit and read a book for pleasure, crochet a small project, go through family pictures, make calls and send emails to family.  I also shed a few tears while reading and re-reading the sympathy cards from family and friends while mulling over the love and concern of dear people who care so much about my loss.

A new idea

Unexpectedly, a few mornings ago an idea appeared: it was time to change things a bit.  Walking through the house into the bedroom, and briefly reminiscing, I knew just what I needed to do.

Tucked away in the back of the dresser drawer for fifteen years was a bundle of cards carefully tied together with a black ribbon.  Setting down my coffee on the dresser, and the stack of recently received sympathy cards that I had just read through, the next thing to do was instinctive. Reaching between layers of folded comfy sleep wear and the last nightgown my mother had given me years ago for Christmas, my hand found the packet in the back of the drawer.  It was tucked away ever since my mom had died unexpectedly in 1997.  Tears welled suddenly fresh in my eyes and heart as I retrieved it.

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Re-reading sympathy cards, now mourning loss of both parents

For the next hour, both sets of cards sat on my lap and had my undivided focus. Without regard for schedule or other obligations, life stopped briefly for mourning and letting my soul cry again.  I re-read sympathy cards from friends and family that had comforted me when I faced intense grief years ago, realizing that some of the friends who sent them were now gone, too.  Bittersweet memories of love and sorrow, void and loss, flooded back while slowing to intentionally mourn my mother once again.  Tears soon turned to prayers of gratefulness for the depth of fellowship and concern shown by these dear concerned people.  Friends, church members, co-workers and distant family had all sent their messages and had prayed for me then, and were expressing similar love and care now with my dad’s passing.

Savoring the beautiful cards and reading each kind personal note, my sorrows fused together as the loss of both of my parents was somehow mingled.  They had loved each other so much in their lives, and so I wanted to love them and mourn the loss of the beautiful thing that was “them” together again, too.  But, I knew it was now time for me to put away the sympathy cards, at least for now, and take one more step forward in my process of mourning. Time to expand my boundaries a little and shift my focus a little more away from my pain and loss, and back out toward the waiting needs of others around me.

Thoughtfully re-tying the black ribbon around the old cards, I pulled out a new ribbon from my sewing cabinet and tied it in a similar fashion to bundle the new cards.  Both precious sets of cards were tucked together back into the place where the old ones had been nestled for years.  They rest now in the back of my dresser drawer, waiting like a memory preciously held but hidden away in a personal, secret place, waiting to be retrieved once in a while and ponder again when needed.

Messages in the cards help me capture the thoughts of love for my parents and the warm care of those who sorrowed with me at their now joined loss.

Allowing space and time to grieve

So, although they both are gone, there still rests a quiet memorial in my heart for them, and a little simple reminder of love and care tucked away to revisit when my heart once again will remember and ache.

By frank wouters from antwerpen, belgium (Flickr) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons
Photo courtesy of Frank Wouters, Antwerpen, Belgium

There they will be, always waiting for me to pull out and read, ponder and be encouraged by the love poured out in sympathy from those who cared so much and encouraged me in my sorrow.  There may always be a time when writing, committees, and even important work responsibilities can wait.

A hurting lupus patient needs to remember to re-prioritize when grief or other heavy burdens of life arrive, acknowledge the grief, and allow themselves time and space to cry.  We should let the grief be an important interruption to the normal flow of our life, and let the need to grieve take its necessary place.  Taking time to allow ourselves to grieve is an important part of taking care of our lupus.

My grieving will continue for a while, and will likely take many more months to diminish intensity of the loss.  Mourning is a potent, normal human feeling to be experienced, but not squelched nor repressed.  If not permitted, the pain of grief will still find its way out somehow.

The place of faith in grief

thankful moments

In grief, remember God

When I lost my mother many  years ago, within weeks my lupus progressed for the first time into an organ-threatening, more serious level of activity and almost killed me.  Although more powerful drugs and an aggressive treatment program has kept it under reasonable control over the last fifteen years, my lupus has never completely digressed to what it was before.  The stress of grieving is a normal part of the human experience, and I believe God can use it to draw our attention to Him, and to help us focus on the importance of seeing our own mortality accurately.

Although my lupus became more severe during my earlier grief, all was not negative.  I grew and gained wisdom from my experience of grief, and I learned to see my mortality in a new light.  Perhaps it made me more aware of the eternal aspects of life, and more focused on my relationship with my Creator.  Sensing our own mortality can foster a strong and humbling sense of worship, especially when we see our own frailty in contrast to our Creator.

Lupus still could have become serious at that time in my life, anyway, even if I had not been going through grief.  Lupus is unpredictable, and the most important thing I can remember about the changes in my lupus severity, no matter what the cause, is that whether I am sick or I am or more healthy, God can help me through the changes in my health.  He can enable me to face and accept the limitations of my disease with His strength, while borrowing His joy on the days my own escapes me.  He is there, upholding me right in the middle of the hard days, too.

Now, I can plan to go forward through this new grief experience without my faith wavering too much, and without excessive fear of future lupus changes I cannot control.  I will try to deal with my grief as honestly as possible, while doing some of the important things I can control, like taking care of myself physically to help optimize my strength.

The impact and season of grief

We must always remember that the only predictable thing about Lupus is that it is unpredictable, and sometimes there is absolutely nothing we do can keep it from getting worse.

To everything there is a season... a time to mourn...

To everything there is a season… a time to mourn…

Even mourning that is “well done” can still be an intense stress that triggers and exacerbates any chronic illness, even Lupus.  We should never feel that if we see increased lupus activity in response to life stresses, we somehow didn’t “healthfully” grieve or cope with new stressful chapter in our life!

Perhaps a flare of symptoms is inevitable, despite what we might try to do to prevent it.  We might just be experiencing the normal logical result of the circumstance we are facing.  The stress of loss of a loved-one or any other major life stress always has potential for triggering a flare of lupus symptoms, or triggering other health problems in any person, healthy or not, due to the natural physical influence this type of normal human stressful experience has on our body and health.

But, now, in the midst of my grief, any attention I give to making sure I am mourning well just might help me stay a little more well, too.  God Himself makes a point of instructing us about grief in the Hebrew poetical scriptures, reminding us that, “to everything there is a season,” and specifically that among the seasons of life there is clearly “a time to mourn.”  So, for this next season or two in my lupus adventure, mourn I will, for mourn I must!

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Comments on: "Lupus and the grief experience, the next chapter" (7)

  1. Thank you for sharing your journey through this grief. I certainly felt your sadness when you spoke about reading those sympathy cards for both your mother and your father. Reading some other things you wrote here gave me a feeling of freedom to grieve for something I was questioning God about and have felt loss for. Thanks for real words and practical advice not only for Lupus patients but for people in general.

    • MM, Thank you once again for your expression of sincere support in my adventures walking with lupus and the Lord. There is nothing quite like loss of someone we love to make us see things we can easily ignore otherwise. I think that only in the realization of our finiteness and powerlessness in the face of death can we fully acknowledge, grieve and then accept our losses, no matter what they are. Christ is the God of all comfort, as you already know! You are such a precious cheerleader in my journey!! Thank you for being you! LA

  2. Lindsey said:

    That is such an amazing article. Thank you for sharing your experience. One of the thins about being human is how hard it is to loose loved ones. “We are not made of endings,” but once we learn to cope with all the different things in life we can find peace and joy. This talk change my life in so many different ways, and I believe it could just make yours even better. I would to know your thoughts about it 🙂 https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng

    • Lindsey, thank you for your kind feedback about this article and taking time to share your comments here. Indeed, without the Lord we have no source of joy with which to overcome life’s great sorrows. The joy of the Lord IS my strength! Neh. 8:10 LA

  3. Sorry for your loss but you are handling it well.

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