Illness and loneliness
The diagnosis rate of aplastic anemia is three people out of every million and when a sample of my bone marrow confirmed what blood tests were suggesting, I remember feeling that ratio sit heavy in my stomach.
Sickness forces a person to confront an uncomfortable truth; despite the instability of our own lives, the world doesn’t stop spinning to take notice. I watched the people around me continue on as normal, and my normal was gone. It made it hard to participate in the give-and-take relationships demand—–a friend’s sincere problem with a co-worker seemed inconsequential compared to my bone marrow problem.
No matter how much I told myself the bitterness was misplaced, I couldn’t help feeling it. So instead of being the sanctimonious sick person, I pulled away and settled for withdrawn.
When we moved to bone marrow transplant things changed. My treatment took me nearly 3,000 miles across country to an apartment complex for transplant patients. The circumstances that had separated me before were now my connection to the community. Everyone here was immnosuppressed, knew what a neutrophil was, and the difference between autologous and allogeneic transplant. Everyday shuttle trips were an opportunity to share and learn from neighbors—-iced tea was the one fluid John could get down during the chemo or is anyone else having problems tolerating drug xyz?
It’s become a joke(the best are true) that after the many days in hospitals and clinics, the most useful advice over the past 16 months was gathered on that shuttle.
Looking back, in those first months after diagnosis there were things I could have done better. Social workers offered to put me in touch with aplastic anemia survivors and support groups. I never pursued those outlets with any conviction though; the sick often fall into thinking more and doing less.
Yet there are things to take away from isolation. Loneliness is a part of all our lives and it has to be—as a vehicle of assessment and personal improvement. But even more so it serves to remind us of that primal need to engage in something bigger than ourselves.
September 25th, 2010 at 4:50 pm
sometimes we talk about trouble with a co-worker because it is inconsequential.
it’s my experience that more people have been forced into a kind of loneliness than we sometimes realize. different obstacles affect different people… differently. so whether we know it or not, a lot of people you come across have this THING in their past that made them feel disconnected and different from those people they once had a give-and-take relationship.
rather than relive that, we talk about the co-worker. or whatever else. or so i have found.
if we feel more comfortable with a new group of people after that THING, if there was something about that THING that makes it easier to relate and share with people who had a similar THING, that’s fine. but it might worth thinking about how different experiences — from loss, to failure, to illness, to mistakes — have made others feel similarly to how you might now.
that might be something that would help you relate in a way that a problem with a co-worker might not.
-cgw
September 26th, 2010 at 12:00 am
Thanks for commenting. Sure, intellectually it’s nice to think about the oneness of our loneliness—that although it’s sparked by different circumstances ultimately it all burns the same. I think right now if I were to talk to someone who had an entirely different THING that made them feel isolated some time ago we could nod heads and say “Wow, in a way our loneliness wasn’t so different you know?”
But two things. First one you hit on and I’ll reiterate; people (whether it’s a product of the human condition or just our culture) have a hard time sharing a particular vulnerability while their living it. It’s why I couldn’t write this post a year ago.
Second, It’s not my intention to argue whether all people hurt similarly through life, but to point out that some people(like me) don’t always have the ability to put their own pain in the context of all human struggle while going through it. Yes I got over it, but only because suddenly the people around me were similar to me in a very recognizable way. It wasn’t so scary to be vulnerable there because everyone shared the exact same vulnerability. Whether that’s the best way to get through, I don’t know, but it was my experience.
-Matt
September 26th, 2010 at 7:45 pm
Dear Matthew:
God has a plan..he put you here for a reason! (the homily at today’s mass)… Being lonely, and being “alone” are 2 different scenerios… You have battled a fight most don’t. however.you now can be the advocate for all those who are ignorant to the circumstance..
You need to focus on a positive “goal” and let God figure out the rest. If you like to sing, “sing” if you like to draw” then “draw” Do what makes YOU happy..the rest of the world is on thier own plane..
Michael is blooming and I tell him always…LIVE FOR TODAY…live it as though it were your last.. as everyone of us should! AA SAA or not.. the diseases are bumps in the road.
Pray for courage, and tenacity!!You will then find your mark on this earth
Mary
September 27th, 2010 at 10:40 am
Hi Matt, Three out of one million and you are one of the three. Well that is a major slam right there.Considering the hand you have been dealt, the tremendous amount of life /death decisions,treatments you have had to deal with in a 15 month time span I think it is remarkable you have such clarity of thought and introspection. Geez most people would still be reeling from it all. I commend your fortitude and bet that is partially why you have come thru this so well. Enjoy reading your stories.