It is a shock, after a long exciting career, to learn that you have an incurable disease that renders you disabled. One day it wasn't there; the next day it was. (Although in truth it probably had been coming on for a couple of years.) The diagnosis: Idiopathic (of unknown cause) Pulmonary Hypertension. Who had ever heard of it before? I certainly hadn't.
It is a disease that scars the lungs and creates high pressures in the lungs. It only involves the heart as the disease runs it course. The heart has to work harder to get oxygenated blood from the lungs and, over time, enlarges. Most sufferers of this disease die of congestive heart failure. It is a rare, progressive, and (as I said) incurable disease, although medical science has made remarkable progress over the last few years in treating it.
"Idiopathic." No one knows how or why I came down with pulmonary hypertension. It's a lung disease, but I never smoked. In life, people encounter difficulties. Mostly I've seen that happen to others, including my own children. There will be more on that in this blog.
Now being permanently disabled, with time on my hands, I am looking back at the full life I've had and reflecting on events, people, and challenges. Ah, life. We should never be disappointed in it. Through the years I've learned to be grateful for all experiences. Each one contributes to who I am and what it means to be alive and human.
Although I have had back surgery that relieved the pain of spinal stenosis, I am missing half of five of my lower back vertebrae and have a 37% curve back there, too. I have been learning to deal with chronic pain for several years. A back brace makes life bearable, but I have had to learn to adjust my ideas of what I can and can't do to match my physical abilities. So, I enjoy reading instead of hiking, cross stitch instead of swimming and volunteering I can do sitting down. It takes a while to adjust to what your body will let you do. I know you well enough, Marti, to know that you aren't going to let this get you down. Your sense of humor seems to be intact along with your zest for living. Pamper yourself!
ReplyDeleteSuch a sweet, encouraging note! Thank you, Diane.
ReplyDeleteA friend who was unable to post here for whatever technological reason sent me this question another way:
ReplyDelete" I wondered how others can best help those who have disabilities. I am one of those who often wants to just be left alone when I am not feeling my best, or am feeling down. You have said that you are also an introvert,... but you are dealing with a long-term situation. I notice that you are focusing on reconnecting with people who mean something to you. Other than responding, what is truly helpful from others, to you, as you deal with your disability?"
Such a good question, and one I confess I haven't thought that much about. Let me begin my answer by saying that I do notice (and I think this is more from my particular "terminal" diagnosis than from the fact of being disabled) my need to reconnect with people who have mattered to me throughout my life. I draw energy, socialization, and such coping skills as laughter and humor from them. I also notice that I have an urge, daily, to tell people how much they mean to me.
But as for what I need from others? I am an introvert (though most people who know me don't believe it). Introversion is more a quality of drawing energy, and I don't draw energy from a roomful of other people except on the very rare occasion. Mostly I draw energy from quiet times of reading and reflection in my own home, alone. This means there is not a lot someone else can do for me, at least at this stage of my disability. (My disease is progressive, so it will get worse; just don't know when.)
But the fact that this question was even asked shows enormous sensitivity on the part of a dear friend. I am a big Facebooker (which gets me out of the house, so to speak, without leaving the house), and it is always great to hear from friends who comment on my posts. In other words, helping keep communication alive is, for me, the best thing anyone can do for me during my long-term disability. I can get very lonely at times.