It is that time of holiday truce between Thanksgiving and Hanukkah and the season of Advent, and I am reflecting on the many gifts I have received since my rebirth in ALS. In my three years since diagnosis, it has been so rare to feel like there was something I could do about my physical regression. I have gotten used to the idea that, as one of its gifts, ALS takes and all I can do is anticipate the loss. This is been borne out by experience, for example my mobility has regressed from walking with the support of a cane to a walker to using a scooter and now spending most of my time in a power wheelchair. The decline of my physical capabilities has been inexorable, and the challenges have become, especially in the past three months, exponentially iterative – one multiplied on top of another on top of another. It should be no surprise that I had come to the point where I despaired that anything I might do in anticipation would be totally palliative in nature, holding off the inevitable and trying to maintain where I was for a few more days or weeks. I had come to despair that nothing would result in my feeling better, that each day would be a little closer toward death, that the best I would ever feel would be right now, because the nature of ALS is to feel worse and worse and worse. Thankfully, in the past month that situation has changed.
In June, I was tested for diaphragmatic strength and phrenic nerve function to see if I might be a candidate for a diaphragmatic pacing system or DPS. Much like a heart pacemaker, only with the power source outside of the body, the diaphragmatic pacing system stimulates the diaphragm causing it to contract and not so gently forces the person to haul in a large breath of air. The DPS was first approved for persons with spinal cord injuries as a way of weaning them off of a ventilator. Aside from the initial surgery to place the electrodes in the diaphragm, the DPS is far less invasive and requires much less maintenance than a ventilator to keep it going. Over a year ago, the Food and Drug Administration approved the DPS on a compassionate care basis for the treatment of ALS. I have been watching with great interest other brothers and sisters in ALS who have had the DPS installed, and I have been doing a great deal of research on the pluses and minuses of the system.
Having passed the June test, it came down to waiting for my breathing to deteriorate into the treatment window that Mayo uses for its protocol, and to file with my insurance to see if they would support the procedure. Those two events came together in mid – October, and I had to decide quickly whether I would do the procedure or not. One reason you might not go through with the procedure is that the surgical team is not sure whether the DPS can be implanted until they have you open and they can stimulate the diaphragm directly. If it contracts, all systems are go; but if it does not, then they close the incision and send you home. I have had enough disappointment already, so even as I scheduled the procedure at Mayo, I steeled myself for the distinct possibility that my diaphragm would be too far gone for the procedure. But it was a rousing success. On November 14, I had surgery to install the diaphragmatic pacing system, and on November 15, I began the process of calibrating its stimulation to the wide smiles of the medical staff.
And here is the first gift.
I feel better. I am breathing more deeply, tolerating the electrical shock to my diaphragm very well, getting used to speaking around the delivery of the shock, and ironically, in spite of fatigue from the surgery, I have more energy. Unlike every single palliative intervention that we have made in the past three years, the DPS has actually helped me experience improvement. I am even sleeping more soundly, though not with the device, and my voice feels stronger than it has in a number of months. What a joy to experience any physical improvement.
Gospel! And there is more.
I have managed to solve some communication problems that I was having before the surgery. With the loss of hand and arm strength, I had lost the ability to use an iPad, to manipulate both the speech to text software I was using, and the smart house technology that I relied upon for basic functions such as turning on and off lights or music or other devices. In the past month I had despaired that I would be totally reliant on another person in order to accomplish such basic tasks. And to be truthful, I am so reliant on those who are with me for such simple things as straightening my fingers, placing my hand on the joystick of my wheelchair, or doing a bit of range of motion just to relieve the physical effects of ALS. But in communication, with a stronger voice and new technology workarounds, I am beginning to find a bit more of that independence that I value so greatly. Using an actual laptop computer instead of an iPad has allowed me to interact totally by voice, and while I am not back to 100% of what I was, the 85 to 90% is highly acceptable. So, even though this is more of a symptom handler, in conjunction with the DPS, I feel like I have voice control over my life again.
But, dis ease insists that the shoe must drop.
Over the past three years, I have worked hard not to be hopeful in my progression. I know that sounds strange, but I have learned that in such hope, particularly with ALS, lies crushing disappointment. I have sought to be realistic and honest and truthful with myself about my prognosis, my life as it continues, my life as it ends. With the installation of the DPS, I find myself having to reconcile this little uptick in how I feel with what ALS hammers home day after day after day. I mustn’t hope for more than is possible. What is possible is that I will feel better for a while, that I will find my voice again for a while, and that my physical body will continue to deteriorate. Reconciling the juxtaposition of deterioration with the tiny flame of hope that the DPS kindles has become a new life task for me. I am by nature a hopeful person, and I have managed to channel my hope into the lives of those for whom I care and that I love. My hope is for humanity, and that through relating my experiences it is helpful to find deeper humanness. And I have learned not to hope for myself except to accomplish this life as best I can within the framework of the circumstances in which I must exist.
My new reality is really just my old reality – I will fulfill body and spirit as designed.
In essence, I am granted the gift of spiritual rationalism. It is in the nature of the human body to wind down until death. It is in the nature of the human being to hold death off for as long as possible. These are facts. One can leave you depressed and morose, the other unrealistic and silly. So I now seek to continue my process of reconciliation, feeling better yet getting worse. I know that none of this is a cure for ALS. Just as Leonard Cohen points out that there is no cure for love, ALS points out that there is no cure for life. But, to have a procedure that results in feeling better almost immediately, coupled with finding a way to bring voice control back over my environment, I have a more positive outlook than I have had in months. I know that ALS continues, but I feel more the possibility of this spiritual and physical and emotional goal I articulated to myself three years ago – to live fully until I die.
And this is no holiday truce – each of us is granted the gift of living in hopeless possibility.