It's Such A Pain

The dictionary describes pain as:

pain   [peyn]

noun

1.  physical suffering or distress, as due to injury, illness, etc.

2.  a distressing sensation in a particular part of the body: a back pain.

3.  mental or emotional suffering or torment: I am sorry my news causes you such pain.

4.  pains,

a.  laborious or careful efforts; assiduous care: Great pains have been taken to repair the engine perfectly.

b. the suffering of childbirth.

5.  Informal . an annoying or troublesome person or thing.

There are so many hidden pains, whether physical, emotional, mental, or spiritual, and yet most pain cannot be seen by anyone else.  It certainly cannot be felt by someone else, at least not in any comparable way because feelings cannot be shared that way.  Someone may say to you, “I know how you feel”, but the truth of the matter is they do not.  It is in every way impossible for one to know how anyone else feels.  We can imagine the pain another is in, but that is the full extent of it. 

How then do we reach out to those whose pain has become a burden beyond their means for endurance?  How do we help without smothering?  How do we help without insulting?  What do we say without hurting?

We’ve all heard the good intentions of others telling us to “call if you need anything”, or “keep your chin up, it will get better with time.”    I’ve heard some outrageous words of ‘encouragement’ when my husband became ill with brain cancer and later when he died from it; words that caused more pain to my already broken heart.  So we put on our Happy Mask and hide our pain from the world.

Hidden diseases, menacing pain in a body that looks in every way healthy, are an enigma to the outside world as well.  “You look just fine”, “It’s all in your head”, “Just don’t think about it”.  More words from those who think that they are helping, but in reality their help is “all in their head.”  

So what do we do?  Do we pretend that we are practically perfect in every way?  I’ve never been to successful at flying with umbrellas so I think we should leave the “practically perfect” pretense to Mary Poppins.  Do we hide from the world and lick our wounds in private?  Also not a good plan, hermits tend to get overly cantankerous and bow-legged.  What do we do?

We connect.  We find a place where we are free to be who we are.  A safe place where there are others who truly can imagine our pain, whatever kind of pain it is.  Or if they can’t imagine it, they can at least empathize with us, rather than patronize us.  A place where we are encouraged to look beyond our pain into the world as it can be when we are surrounded by the love of those who have already walked our journey or are on the same road we are walking now.  We find a place like CVO and SCwSG, where our life and our dreams are nourished, where we are free to leave our masks on the coat rack and we are free to express our pain, our thoughts, and our hopes.

Today's message was shared during a Zoom video call. Join people from all over the world and SCwSG/CVO members/volunteers every Tuesday, at 10am mst., for 15 minutes of:
Hope & Encouragement with Shelley Brandon!

SCwSG's Grief and Encouragement Coach

James Nettles and the Diagnosis-Cryoglobulinemia!

CVO Featuring James's Cryoglobulinemia Journey...

My husband James Nettles was always a healthy, hardworking person, but in November of 2008, when the weather in Virginia became cold, he began experiencing pain in his hands and feet. His fingers and toes had begun to turn a dark color. His hands and feet swelled to unimaginable proportions. The pain was excruciating. Thinking he had severe rheumatoid arthritis, the doctors' gave him prednisone. He was taking 60 mg a day. His swelling did diminish somewhat, but the ever-darkening coloring in his toes and fingertips worsened.


Frustrated, we tried a new rheumatologist who also sent us to a hematologist. They both agreed that he should start Cytoxin a chemotherapy drug given by IV. They hoped the immune system would stop attacking itself.


Over the next couple of months, his toes and fingertips became necrotic (dead cell tissue), and the pain was almost more than he could bear even with the strong narcotics. Now, July 2009, the vascular surgeon said the toes would have to be amputated as he was in great risk of infection.


After the amputation things started to improve, and James began taking a new drug for the arthritis. In November of 2009, he again started experiencing the same symptoms. This time however, his toes went necrotic much faster than the previous year. Shocked, we tried a new vascular surgeon. Again James went back in the hospital for a second amputation. The surgeon removed his remaining three toes on his left foot. We left the hospital in mid January of 2010, thinking perhaps this time things would work out better.


A few weeks went by, the wound did not heal and we were desperate for answers. The stress of not being able to keep his heating and air conditioning business going took it's toll on us even while we were afraid he would lose more of his extremities. I decided to e-mail the world famous Mayo Clinic in Rochester, MN.  The surgeon agreed that they may have seen this condition, and, if we could manage, we should go there.


In early February of 2010, we boarded a flight to Minnesota. James could barely stand and was in unbearable pain even with the narcotics. Much of this he doesn’t remember.


We had an appointment with vascular surgeon and the vascular “wound” clinic. One look at his “black” toeless foot and they told us he needed to be admitted as he was in risk of going septic and possibly even dying. After 10 days and endless tests, including a angiogram and a bone marrow biopsy, we returned home. Finally we had a diagnosis: Cryoglobulinemia type 1 and Multiple Myeloma, neither of which we had ever heard of.


A week later, we returned to our local vascular surgeon. Clearly, the wound had not healed from the first two amputations. They admitted him that afternoon. The surgeon again tried to take off the necrotic skin, which was the remaining top part of his left foot. Two weeks passed and still no healing. It was now early March. The determination was made to go higher up the leg in hopes that the larger blood vessels would have better circulation and the wound would heal. Now his fourth amputation, the surgeon took off his left leg below the knee.


Having read information on cryoglublinemia, I requested that the surgeon warm up the operating room and the tools he would use. We are not sure if that was a key factor, but this amputation finally healed.


In all we spent 14 months searching for answers and visited numerous doctors. In September of 2010, James underwent a stem cell transplant and high-dose chemotherapy. The team of doctors at the Medical College of Virginia thought that this procedure would also put the cryoglublinemia in remission. We are happy to report the stem cell was a success and the cancer is now in remission.  As for the cryoglublinemia, we are cautiously optimistic.


We now live in the greater Atlanta, GA. area with our high-school-age son, Derrick, and three dogs.


Anne Nettles, wife CVO Team Members