Monday, August 10, 2009

Lou Gehrig

There aren't too many people that have a disease referred to by their own name. However, such is the case of the all star baseball player Ludwig Heinrich Gehrig, or Lou Gehrig. Born in 1903, Lou played for the New York Yankees until being diagnosed with amyotrophic lateral sclerosis at the age of 36.

This post though isn't about him or his disease as much as it is about the idea of hope.

There's an intriguing post up on ESPN entitled "Sincerely, Lou" which documents correspondence between Lou, his wife, and physician during his 2 year battle and ultimate death from ALS. The site has both a short video summarizing the letters as well as copies of some of those letters for readers to peruse.

Reading through all the letters myself I was struck most of all by the concept of hope.

This is evident in several ways. One way to search for hope is to look for survivors. Lou does this in his letters, telling his doctor about people he encounters with either presumed ALS or other similar muscular neuropathies that have been cured. Like little ornaments of hope, these names continue to crop up during his correspondences.

Another way people search for hope is in cures themselves. I wanted to laugh and yet felt a strange pity reading through all of the types of cures that Lou tried. He took everything from high dose vitamin E and B, to histamine injections, drinking raw vegetable juice, apple seed oil, heat treatments, etc. With each new possibility he'd write to his doctor asking advice, sometimes trying them and other times passing them up. Almost every letter included some talk of proposed treatment and new research.

Probably the most startling display of hope comes from the direct questions, pleas and responses between the 3 parties. I have included excerpts from the letters, which were made available to ESPN through the Rip Van Winkle Foundation.

Here is a brief correspondence early on in the course. Lou had written asking prognosis questions to Dr. Paul O'Leary. After briefly discussing the likelihood of improvement Dr. O'Leary writes, "there is no need of my filling you with a lot of bunk about time factor...they are those things that cannot be determined on a numerical basis because they vary in each case." (Dec 8 1839) To which Lou replies, "Thanks for that swell and most encouraging letter. Up until now, I was under the impression that every inch of ground lost could never be regained, but...having it confirmed by you...I will be well on the road to recovery very shortly"(Dec 19 1939)

However as decline occurs he reaches out again for the truth. Lou writes,"Please don't judge me a cry baby, or believe me to be losing my guts, but as always I would like to know the actual truths and not to continue to receive encouraging reports which have little or no chance of materializing, or to continue to live in false hopes...PLEASE reveal to me the honest opinions."(March 31 1940)

The doctor's reply, "half of the patients with this disease derive definite relief from it...I think you must keep plugging along... you must realize that there will be days when you do not seem so good, but I am sure that such days will become of shorter duration and further apart."(April 8 1940)

Ironically the doctor sent that letter before receiving the following from Lou's wife Eleanor. She pleads, "I believe we should keep him on the optimistic side by hinting about other cases on record which have become practically bedridden, and then gradually improved because of some mysterious working of nature....it must be very difficult for you to answer his last letter to you, and I feel we must all lie like mad. I want him to keep a thread of hope; there is no point in adding mental torture to the horrible experience he is now going through."(April 9 1940 ) (Emphasis mine)

Dr O'Leary privately responds to Eleanor,"I have always disliked to tell falsehoods, but I feel that with Lou we must keep his morale up, not only for the benefit and help it may be to him, but also in order to save him the shock that accompanies such discussions" And yet the real truth, "Our frank cases of AML here have not done well. "(April 16 1940)

How often do we hear this excuse for hiding prognosis, that the truth's shock would actually hasten the disease process!

This final exchange shows that even as Lou reaches out again for truth, a conspiracy of sorts between his wife and physician continues to prevail. From the context of the letters we know that Lou has even begun to choke on his food during this time. Lou seems to sense reality and asks, "one cannot help but wonder how much further this thing can go and I wish you would again drop a note to you thoughts and percentage of making a proportional recovery"(Jan 13th 1941.)

On the same day Eleanor separately writes, "I think he asked you again his chances of partial recovery in his letter..have him sold on the idea that he has a fifty fifty chance for partial recovery...I want him to always have this hope...so I would appreciate your falling in line with me and together I am sure we can keep him from mental torture"(Jan 13th 1941)

The doctor evidently goes along with Eleanor's request and responds, "I cannot do other than remind you of the fact that other patients have gotten down to the point where they have been in bed...before started to note a favorable swing upward. The probabilities are that you belong in this same group."
(Jan 17th 1941)

What an tremendous example of hiding truth in the name of hope.

Lou Gehrig died June 2, 1941, possibly still believing in that 50/50 chance of recovery.

Special thanks to Pallimed reader Susan Lysaght for alerting me to this story!

4 Responses to “Lou Gehrig”

Not perfect, but His said...
August 10, 2009 at 7:31 AM

I've been sharing a video about "Motor Neuron Disease" (as ALS and associated disorders are called in the UK)--Sarah's Story was done to try to demonstrate the emotional impact of living with these diagnoses. (Quite a contrast to the "conspiracy" to hide the truth from Lou Gehrig.)

http://vimeo.com/3029287


Christian Sinclair, MD said...
August 10, 2009 at 9:29 PM

Great find Amy and Susan.

The writings in the letters sounds so foreign to the words we write today. In them exist a certain formality I doubt we shall ever see again, yet i strive to recreate in my blog comment here.

It is rare to get such a open and raw insight into motivations.



NPBH I have seen that video before. Very moving and insightful.


Anonymous said...
August 15, 2009 at 8:27 AM

Michele Ruth
When my father was actually diagnosed with ALS it was Dec 23, 2006. I had already suspected since July of that year. At my mothers funeral people kept asking me when my father had a stroke. He hasn't I would answer them. The VA had done an MRI..., said he had not had a stroke, so in their infinite wisdom sent him to speech therapy.
I knew. In my gut. I had to practivcally throw a temper tantrum to get him to KU. I think he knew also. When he was offered the medication that MAY give him a few more months he refused. No one played games with him. Thank God. Thank God for Dr Baron at KU. He knew what was to come. He never lied to my father. I think it is cruel to not let a person know the truth so they can plan. Say what they want to say. Get things in order. So other people can say what they needed to say. All of us, including my father, gave ourselves quality time that was so precious. No pretending was in it. He knew, we knew. we loved.


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