The Words of the Schanker Family
Hyeshik Schanker- Challenge and Improvement
September 21, 2007
Dear Brothers and Sisters,
I am sorry that I could not update you again concerning my wife's situation until now, and also please understand that it is difficult to answer all of the phone calls, even those from our dearest friends. As we prepare to move Hyeshik to a post-acute facility in Maryland, I am working closely with the Overlook Hospital case manager and social worker to find an appropriate facility with an available space that is within our insurance network.
It has been an extremely busy, AND internally challenging week, wrestling with our insurance company as well as researching and screening facilities in the Maryland area, to assist the hospital here in placing her. They are great, but though they know who to refer to in New Jersey, they do not know all that is available in Maryland. And I, of course, want to do a better job at finding my wife the best care we can than I was able to do in helping her prevent this tragedy.
It is also deeply troubling to recognize that coverage might possibly finish before my wife's need for care and rehabilitation does, and the fear that I will not be able to care for her as she needs is challenging and debilitating.
I take some comfort from the NJ case manager's report that she has never worked with a more committed, hard-working and astute patient supporter than me. But the real champions are my dearest wife, who is making great progress... and our beloved daughter Mi-ae, who has already withdrawn from nursing school and deferred her scholarships to dedicate wholeheartedly to her Omma's recovery. Without her constant attention to her mom, I could not have the time to focus on the practical issues without abandoning her.
In researching the experience of patients who experienced "locked-in syndrome" and were able to regain enough communicative ability to break out of it and tell their story, it is hard to imagine a more horrible and hellish experience -- able to think, feel, hear and comprehend, but unable to move ANY part of the body, except perhaps limited movement of the eyes.
The frustration, despair, and struggle to regain a purpose for being alive are frightening. The central motivator is the hope of rehabilitation -- and any progress, even achingly slow and painfully achieved, inspires that hope.
I have been as realistic about my wife's situation with her as I have been with you, but I have not expressed any limits on how far she can restore or the odds of her getting there... nor will I set any in my own mind, despite wanting to start from the reality of her medical situation.
I am setting goals for her, step-by-step. And after several days of her withdrawing either neurologically or emotionally, we seem to have a partnership as of tonight. Before I explain this more deeply, let me share our champion's incredible achievements so far:
1) She breathes on her own!!!
When it seemed a more distant goal last week, we decided to remove the tube from her mouth and throat, and place a tracheal connection through the front of her throat, more comfortable, less prone to infection and easy to attach and remove to work her lungs. The tube is now off virtually 24 hours a day, with only an oxygen mask around her neck just in case she needs it in emergency. Many with a stroke like hers cannot overcome this hurdle for some time, if at all.
2) She looks to the right!!!
When she first awoke her eyes were frozen leftward with only slight up-and down movement. One day last week she woke up with her eyes facing straight forward, with some left-right movement (though not following any visual motion -- called "tracking"). Tonight, after a day of trying to get her to communicate with signals and work with me (she seems to respond best to me), I looked at my dear, dear wife... and she was looking totally to the RIGHT! It was brief, but when I asked her to try to move her eyes to the right again, she struggled to do it, and got to the middle. This also defies typical "locked-in" syndrome, where lateral movement is not normally possible. I am so proud of her, and I discovered a secret key today to waking her into alertness, and it may be the key to this progress, but I can't yet reveal what it is until I test it some more <smile>. It's our little secret...
3) She is strong, breathing deeply, full of color, and without any infection. She took her first two operations like a champ, and tolerates both tracheal and feeding tubes very well.
Among our toughest challenges right now are helping my wife keep motivated and strong. As I mentioned, according to testimonies (and what I sense with her) she is in a profoundly frustrating and depressing situation, especially for someone with my wife's "take-charge," "can-do" character.
Her tendency to withdraw and drift-off might also be neurological -- she cannot keep her temperature stable and runs a near-constant fever (despite no infection), which probably makes it hard to concentrate. Now in New Jersey, and from next week hopefully in the DC area, we don't need a lot of visitors or those who feel uncomfortable or heavy being with her or who will tell me what we should have done to prevent this. But those who love and know my wife and whom she knows, who can encourage and stimulate her, in Korean or English, please try to visit.
Another challenge is that my wife is physically healthy enough to graduate from acute care, but not responsive enough to begin physical therapy. If doctors or insurers conclude that she cannot progress with medical or rehabilitative care, and decide she can only receive "custodial" care, our insurance, which has so far covered everything, will stop covering her care.
We are pursuing and applying for available government alternatives, but our chances there are slim. So for now, we must encourage, observe and witness her daily progress, and fight any defined medical limitations. The caregivers at this hospital have been great, and have accepted me as a partner in their team, but we haven't yet secured her next step, and don't know what we'll face down the road. We hope to be in Maryland by early next week.
We will begin acupuncture and other energy and circulation-stimulating alternatives as soon as it is feasible. And we deeply appreciate your prayers, efforts to send healing energy, and spiritual support as well.
A beloved friend created an internet "Prayer for Hyeshik Schanker" site on facebook, and I've heard hundreds of people have placed prayers there. Hyun Jin nim, who knows my wife from the time she helped care for him as a child in Korea when TP came to America, called and encouraged both of us -- which moved us deeply (as soon as she heard his voice through the phone, she opened her eyes and perked up).
Many friends and elders have supported us as well. And while I will not become desperate or beg God from weakness for support, this situation makes more clear the things we can control and those we cannot, and is deepening our bond with God, our trust in Him and our prayer life.
I hope and pray that each family can learn something from our experience. In addition to the spiritual lessons, remember that my wife has been a person who worked hard, advocated health and invested in healthy foods and supplements, but who feared doctors, hospitals and surgery so much, that she avoided medical check-ups for fear of bad news, convincing herself that a healthy lifestyle was enough. And I, who gets my check-up and cancer-screening annually and swims constantly, was not assertive enough to push her to use the preventative benefits at our disposal (though I did get her to 2 or 3 check-ups in the last few years). Please, you and those you care for... use the diagnostic power of western medicine and check-up regularly... especially after age 50.
2 of my wife's dearest and closest friends, both Korean with western husbands and both about her age, contacted us with concern and support. One is battling cancer, and another a debilitating disease that will rob her of function and eventually of her life.
We must be vigilant and do what we can to keep our health. The prognosis for the cancer is good, because this sister caught it early. But she shared that she is reflecting deeply upon her life -- have I really loved America more than Korea? Have I really loved, understood and accepted my husband for who he is, what he believes, and his goals? How much pride, resentment or anger have I continued to carry?
She feels that this illness has become an opportunity to renew her life. These are questions I am not entitled or authorized to ask on behalf of my wife. I can only witness to all she has done for God, TP, her family, and for me. But I have my own lessons to learn, and I know we will find deep meaning in this course, that will strengthen and deepen our eternal relationship with God and each other.
We pray for your continued health, happiness and success in your work. With deepening love and gratitude,
Phillip and Hyeshik Schanker and family