Over the years since the onset of my neurological disability, it is only natural that folks have been curious as to ‘what it is” and “how I’m coping?” It is the nature of ‘inquiring minds’ to be inquisitive! Since the onset of my condition I have tried to be open, transparent and candid, in the hope that my experience dealing with a chronic disabling physical condition might be a help to others.
Some eight years ago I began to experience a slight ‘drop foot’ that caused occasional tripping. In time, I realized that something was wrong and saw my doctor who sent me to a local neurologist – who, frankly, was totally mystified!’ This is often typical with the rarer neurological conditions. It took almost a year and a half for me to doggedly pursue a diagnosis with various neurologists. Finally, I was connected to a specialist at UCI who is the head of the ALS, MDA, Neuromuscular Center, who has helped me immensely. After a series of exhaustive diagnostic tests as well as a second opinion from the Mayo Clinic in Rochester, MN, they narrowed my condition to one of two possibilities – Hereditary Spastic Paraplegia or Primary Lateral Sclerosis. With the passing of five years, the markers pretty much were pointing to PLS. The condition is not aggressively progressive but it is progressive. My doctor told me that it won’t kill me but it is something that must be managed and will bring varying degrees of impairment. However, it is highly individualistic and there really is no cure now.
I’m often asked: How have you been able to manage and cope with it? A person in their right mind, of course, never goes looking for such situations, but when they come, and, believe me folks, something will inevitably come our way if we live long enough, how do we continue to “live” and not just “cope” with the inevitable twists and turns of our human journey?
Not long ago, a parishioner recently diagnosed with a somewhat similar condition, reached out to me for advice. I shared the following touch-points with him that have served me well in this unfolding saga and, perhaps, might be beneficial to some of you:
1. Get good medical advice even if it may require a second or third opinion. There is a reason why they call it the ‘practice’ of medicine. In so many chronic medical conditions and especially the rarer varieties, we must be our own advocate in doggedly pursuing both a diagnosis and possible treatment.
2. After the bad news there is an inevitable period of psychological mourning that parallels the classic stages of death and dying (even though one may not dying at all) with a good dose of denial. For me, I went through all that until I came to a level of relatively peaceful acceptance. Amazingly, I never went through a ‘Why me, God?’ phase. Mostly, I reflected on ‘why not me?’ as I see so many folks contracting terrible diseases far worse than mine. This has had the beneficial effect of relativizing my condition.
3. I did not drastically alter my life style or rhythm of life immediately but rather, gradually accommodated to my physical condition. I try always to focus on what I can do, rather than what I can’t do. Mentally, this has been very helpful.
4. With the onset of my condition in my early 60’s, I thank God I didn’t contract it when I was in my 20’s – which I could have. I have had a very wonderful rich and productive life. Yah, it’s a bummer to be somewhat sidelined now, but life is not over. I live each day as a wonderful gift to be lived as fully as possible.
5. Focus on what truly matters in life rather than wasting time with so much of the foolishness that seemed to preoccupy our younger years. Nurture the relationships that make life truly worth living.
6. Don’t run too far ahead into the world of ‘what if.’ What if I can’t walk? What if I can’t eat? What if….?” This is useless paralyzing thinking. Live in the world of ‘what is!”
7. Pace yourself – some days you are going to feel more energy than other days. Don’t overdo it. Follow your doctor’s recommendations about rest, healthy food and physical therapy to the extent that may be possible.
8. Leverage technology to help you with what physical deficiencies may occur – whether that’s using a scooter to get around, voice recognition technology for emails, etc. There is amazing stuff out there.
9. Let the significant others in your life, not necessarily be your primary care givers. I know that this may be easier said than done. There may come a point that some added help may be needed to provide additional assistance in the home. This is all possible. It is important that husbands be primarily husbands, wives, wives, sons and daughters, sons and daughters. Seeing these pivotal relationships solely or exclusively as ‘care givers’ can be psychologically and emotionally draining for them, leaving little room to be husband, wife, son or daughter. However, if you have good independence now, don’t start worrying about that now. Live in the present with gratitude for the past, resisting worrying about a future that is not here yet.
10. Believe it or not, I have found maintaining a sense of humor extremely helpful in pulling me out of the ‘woe is me’ syndrome that can take over at times. I was always a ‘neat freak’ and very attentive to table manners, etc. The condition has caused me some embarrassing moments that, frankly, I just have to laugh about. I often say, “Such is life these days….”
11. Remain interested and inquisitive about life and the world around us. I’ve always been a bookaholic and a newsaholic – I now have time to feed these good addictions.
12. People will want to help – let them! Do not deprive them the opportunity to be empathetic and physically helpful. Let go of the rugged individualistic mentality that can make life more difficult with these chronic disabling conditions.
13. Remembering from a faith perspective that, "we have not here a lasting city," but are rather pilgrims awaiting the fullness of life in heaven, keeps hope of eternal transformation alive. This helps on the 'down' days!
