Spouse's POV Living with Dying Interstitial Lung Disease

Rick and Mary May

September 3, 2018
My husband is dying. I say it out loud far more than I should. It shocks people.  Maybe saying it aloud makes what's happening more real. Maybe it helps accepting the future. I don't know.

Blog post by Mary Katherine May

As a Christian I say that I am not afraid of death and am ready to die.  I now know the hypothetical is different than reality.  I don't believe I fear death, but I do know that being ready to die hypothetically is not even close to being true after hearing from the doctor my beloved is on his way to the pearly gates.

After nearly 45 years of marriage do I have the right to the feeling that it was shocking news? 

He is 68 years old and retired.  Does it mean I shouldn't feel grief but should expect it?

Interstitial Lung Disease is an awful thing.  The lungs fill up with stuff, choking the space where air should go meaning the unlucky recipient of scarring and honeycoming and whatever else dies by suffocating. 

We saw how it was with his Dad.  We know what's coming.

Living with Dying...how do you keep going? Every heavy, noisy breath he takes...I stop asking him if he is alright. He must be tired of hearing me ask.

I am working on being positive.  Some days it's hard work.  No one in their right mind wants to live anticipating death. The best way to live is to make every day the best and leave death waiting until in front of its doorstep.

Washing up dishes after dinner is tough for him and so is making his bed. He has to stop and rest. Bending over to put on socks and shoes is tough so to make it easier he got velcro shoes. He is not supposed to travel by air anymore.

One year after diagnosis, he has lots of pills, oxygen machine, and handicap card for the car. He rides the motorized carts at the stores. Tasks he used to do himself now are hired out. He has to watch someone else do them and sees he is powerless to make what's happening change for the better.

...and the two will become one flesh. So they are no longer two, but one flesh. Mark 10:8

Sometime during the past year it came to me about how the Bible says that in marriage two become one.  I thought, how does one live when half of me is gone? Others have gotten through it, so can I. 

The LORD is my Shepherd, I shall not want.
If Psalm 23 were only that one line long, it would say everything I need to hear.  I can't count how many times this one sentence has gotten my focus back to where it should be. 

Though I walk through the shadow of death
           ...thy rod and thy staff comfort me.
Here is where my faith is my staff.  I lean on my staff to make the walking easier.  Living the faith that I believe means trusting God to handle it for me, and though I forget to do that, the time getting back on track is shorter and I am forgetting less.

Truth!  By experience, I know that in reading the Bible I have placed in my mind Scripture that comes to mind when I need it to sustain me.  It's the same with hymns.  

Leaning on the Everlasting Arm

What a Friend We Have in Jesus

God Will Take Care of You... He does.

As a bookseller, I go through a lot of books.  Part of the preparation for selling is to look at each page so I can accurately describe the condition as well as determine if there will be a profit and price.  This blog post has come from looking at a volume of Annie Johnson Flint poetry and discovering her thoughts about The Heaviest Cross. 

It is not His cross that is heavy;

It is those that our hands have made

That hinder us on our journey,

On our aching shoulders laid;

There is strength for the load He gives us,

And balm for the thorn He sends,

But none for the needless burdens

And none for our selfish ends.

We bear a burden of sorrow;

We carry a weight of gold;

We cling to some treasured idol,

And will not loose our hold;

We bend beneath troubles and worries;

We drag the load of a wrong;

And we cry that the cross is heavy,

And sigh that the way is too long.

Let us drop the sin that besets us;

Let us cast aside our fears;

Let us give our grief to Jesus,

And break our pitcher of tears;

Let us learn of the meek and lowly

Who giveth the weary rest;

Let us take His yoke upon us,

And walk with Him abreast;

For His yoke is easy to carry,

And His burden is light in weight;

He will do His share of the labor,

For He is a true yoke-mate.

Are we weary and heavy laden?

Are we anxious and full of care,

That is not the cross of His giving,

But the one that we make and bear.

Annie Johnson Flint Poems Volume One

Toronto: Evangelical Publishers, 1944

October 7, 2018

Something changed this past month--not in our situation, but in me.  One day I realized that I had stopped anticipating death and had begun living through the circumstance.

Two things occurred to me. First: It had taken a year for my initial grieving to pass (my eyes no longer tear up at any moment) which seems to me a very long time; and, Second: that it is possible to live as though nothing has changed, even though everything has changed. Maybe hearing the coughing, listening to the oxygen machine, seeing how exhausted he gets has all become routine. I don't know. For sure, everything is going to be okay.