One Patient's Positive Perspectives

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Writing in the darkness of midnight

What gets put aside during grief?

Sitting down at my desk and writing seems like such a simple thing to do.  Writing has become an essential part of me. But, lately, life has been getting in the way!  Keeping up with my full-time job in a government law office, keeping house, keeping a husband fed and keeping track of all the details in my life has consumed me.  Adding the grief of losing a parent to the mix compounds the challenge and impacts of a busy life with lupus.

What continues to get pushed aside?  Writing!

So, while my husband is already tucked in for the night and emitting sonorous tenor songs of slumber, I sit alone at my desk basking in the pale light of the computer as it casts a gentle glow into the otherwise darkness of midnight.  Not really alone, I guess, since you are here reading, joining me in the written frozen moment of time.  As I write, I am thinking of you, my reader, and what I might share from the recent days or even this moment to help or perhaps encourage you.  Perhaps in these words you will find a common experience to something you are journeying through, and perhaps by me explaining my present reality, you will be strengthened.  I find it helps to understand someone else’s similar journey, to help me feel that I am not alone.

 Thinking more about mortality

Lupus in a complex lifeI find myself thinking more about my mortality, praying as I move about, talking to God about what I am thinking and feeling as I drive around in my car and move through my day.

I think about the fact that both of my parents are now gone, and that this has instantaneously made me a part of the oldest generation of my family.  Suddenly losing the first parent, my mother, was a very different grieving experience than what I find myself passing through now.  This is a loss of everything that was the idea of my parents, as the couple and team that nurtured, shaped, loved and guided me through the first half of my life.  They are my first memories, they were my source, anchor and shelter from the beginning of my being.  They loved me unconditionally, although imperfectly, and I was always one of their five precious children.

Grieving slows the pace of life

My parents loved each of their children with a unique and customized relationship, and encouraged us to find our own personal path and calling.  My siblings and I were very blessed to be their children.  Now, they are both gone, and we are here without them.  Life will move on, but not just yet.  Grieving slowed the pace of moving forward with life, causing me to pause and linger in the memory rich time of this great loss.

Now, it seems the state of being an orphan has come.  Neither  destitute nor abandoned as I am blessed as an adult to have an established life and family of my own.  An orphan, nonetheless, but not as the state of child orphans so often can be in the loss of their provider and shelter, but finding myself an orphan of the heart.  My heart misses the fellowship and love that will no longer be shared with them.  I mourn the idea of “them.”

I think mourning has stressed my health and at times causes flares of my lupus.  Yesterday was a an especially bad day, gnawing bone deep pain in my legs and arms interrupted my routines and  forced me to stop and rest.  In contrast, the day before was a great one, as I was talking about how I felt my health was on an upswing.  Today is somewhere in the middle, as I am finishing this in the morning, after a few more hours of sleep were finally captured.

Probate adventures in patience

Photo by LA's Daughter-in-Law © 2013

Photo by LA’s Daughter-in-Law © 2013

This past few weeks I have worked diligently on the probate matters for my  father’s estate.  I am the executor and have the job of marshalling his assets, paying his final bills, filing his estate taxes and distributing the proceeds of his remaining life savings.  Knowing that I will be able to sign a sizable check and mail it to each of my siblings as a last act as executor of the estate is a pleasant outcome of the loss I am still grieving.  The whole “marshalling of assets” project has become much more time-consuming and difficult than I ever imagined!

About a month after my father died, and after the probate was filed by my lawyer, the letters of appointment as Executor arrived from the court.  So, I set met with the personal banker at the bank where most of my dad’s money is held. The meeting lasted for hours, as we reviewed different CDs, accounts and broker investment details and the banker was on the phone and communicating online with their legal department in New York.  Once the process of converting accounts started, it took four more weeks to get the money moved into a new estate account. Many phone calls, emails and meetings were  required before the estate account was funded.

Paying my father’s bills

I was waiting to pay my father’s last bills to his residence facility, doctors, dentist, pharmacies, and other miscellaneous final expenses.  The smallest of these was the fee due to the on-site hair/nail salon, and this one was so impatient they kept calling and sending emails, threatening to send the bill to collections for the mere $60 owed to them!  I told the persistent woman she would need  to be patient and wait, and after each encounter would hang up the phone and sigh.

When I spoke with my lawyer about her, she and I rolled our eyes and laughed together over the absurdity of the woman’s impatience to collect such a small sum.  So, when the money finally was available, I sent out a check immediately for the balance due, including late fees, along with a thank you letter for the services they provided to my father!  I just felt compelled to choose the high road.

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Comments on: "Catching up with lupus adventures" (3)

  1. LA thank you for sharing this deeply personal account with us. I also think of mortality more these days because of my illness and because of my aging parents and relatives. There are so many people in my life, including my parents, who I want to be around as long as I am alive. But I know that is not possible. I try to make the most of the time I have with them. I wish you continued strength and comfort during this time.

  2. Thank you for continuing with the updates. It gives me motivation.. I think there are times around flares I let it get me down and feel sick when there’s really a better reason to keep fighting. Thank you for giving me someone to relate to that is still staying strong and not only that but for being a Woman of God. Please keep sharing your walk with HIM! Thank you!!

    • CC: Thank you so much for visiting Lupus Adventures and sharing your comment. It is the hope that it will be an encouragement to the new or old lupus patients to have hope and faith instead of victim mentality and fear. LA

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