When calamity like this strikes, a natural reaction is for a lot of people surrounding you to want to help. There were a lot of emotions mixed up in that for me. For one, accepting help meant that I had to accept that I in fact needed help. It also meant acknowledging that something really bad is happening to me and my family. There was a lot of denial, or refusal to believe, but eventually I had to accept it.
As a family, we are lucky in the sense that we have 1) strong extended family support; 2) strong faith community; 3) strong friends; and 4) strong neighbors. I kept the word "strong" with all those because it does take strength (and courage) on the part of others to be involved with you and to help. Being involved means taking the time from your own life and mustering the courage to face the ugliness life sometimes deals out.
At first I often found myself walking what I call the "ambivalence tightrope". One the one hand I wanted people to feel bad about what happened, too, to acknowledge it, cut me some slack, feel sorry for me, be awed by the fact I've been so torn up and fought my way back. On the other hand, I hated that feeling, hated that I even had that feeling. I did not want anyone to feel sorry for me, to just mind their own business, or just treat me like nothing bad had happened.
Help from Afar, Indifference from Nearby
Not everyone fits the bill, however, and at times I felt like some near me distanced themselves. It felt like they let me down. I don't know why this is, and I don't think I imagined it. I didn't choose to have this happen, but it felt like some people just didn't want anything to do with me afterwards. Or, they were seemingly indifferent about it. Like you're contagious, damaged goods or something. Get out the 10-foot poles. Leper alert. Wow, that's a bad car wreck, let's speed away from that mess. And so on.
Maybe some people don't want to face the reality that bad things happen to good people, or they don't want to identify with you. Or, they just don't know how or what to do because the situation has become so awkward and upsetting. I may have behaved this same way myself, in the past, being on the other side of it, unaware I was even doing it. I'm not saying it's right or wrong, or that others have a duty to help. There is no duty, but I had expectations, and my expectations were not met.
On the other hand, we received help from people that I wouldn't have expected. Some people I didn't even know prior to this. I can't say what qualities they all had, except for a real empathy and a desire to act. Being friends or acquaintances prior to this had no bearing on it. We were so grateful to have these people rush in.
We received everything from help around the house to meals cooked and brought to us. My mom and siblings stayed with us for times, watching the kids, making sure the homework got done, etc. while we were at the hospital or at the doctor. Some people sent money, which seemed weird at first, but you don't think of all the extra gas, groceries, eating out, etc. you do in these times. Those who had been through similar experiences did think of these things, and this is how they helped. Others advised us on how to maneuver the maze and sometimes slow-as-molasses medical world.
In the end, allowing others to help also helps them. The shape this takes depends on the person, as I've found that every single relationship I have to someone is different. It's as unique as the person is. It was important to let them help, let them minister to me. When my life blew up, it hurt others nearby. I needed to help them help me, too.
I received more hours of help and hope than I can count from my pastor. He visited while I was in the hospital, out of the hospital, at the house. He really helped by providing key insights to kindle the hope I needed to get through. Now that the acute phase of this is over, he still visits, helping me find my way back into the world.
What Else Helped
- Meal signup. Someone (our close neighbor) volunteered to organize a meal sign-up. This is a way a lot of people, neighbors, friends, church friends, can and will help you. She took care of it all, saying what kinds of things to bring, when to bring it, and (importantly) instructing not to discuss the situation with whoever was at home. Basically, leave it in cooler at the door, ring the bell, and take off. Not to be rude, but you try explaining the same thing 60 times a month to different people.
- Trusted spokesperson. Our wonderful neighbor who did the meals also served as our spokesperson. She was the contact person for everyone outside the family. She would update everyone, protect our privacy; she was like a hawk circling around us, looking out for us.
- Caring Bridge. My wife set up a Caring Bridge page not long after this all began. It was too difficult to talk, text with everyone that wanted to know what was going on. We only kept direct communication to our immediate family, and they would disseminate the information as needed. The Caring Bridge site gave us a way to keep everyone up to date all at once. It also helped control the message, reduce gossip and speculation. I did not want this plastered all over Facebook or Twitter, so we requested everyone honor that.
- Volunteer to do something specific. Saying "what do you need?" in times of crisis is not always helpful. Doing specific things, and not even asking, helps more, like
- I can take Johnny to hockey practice for you.
- I'll mow the lawn tomorrow
- I'll walk Suzie to the bus-stop in the morning / afternoon
- Here's a basket of breakfast food and drink
- Prayer. I found this difficult at times, because I didn't know what to pray for: healing, that this would go away, strength. Mostly I prayed for strength for myself, and for vigilance by my caring team (doctors and nurses). I sometimes prayed for my fellow patients. I do believe that He is an endless source of Grace and Hope, and to endure this, I needed them; I prayed a lot for strength and signs of Hope. I more wanted Him near me than I wanted results, if that makes sense. In the end my faith is stronger now than it was before.
- Cards or notes. I received several cards from friends, and they helped lift spirits. The ones in which they took the time to write a note meant a lot to me.
- Support group. My wife (caregiver) and I have begun attending a local cancer support group. I was reluctant at first because I didn't see myself as one who needed it, or could contribute. I'm glad I got over that, because I did need it, and I can contribute. Everyone's story is different, but many of the struggles are the same. I'd gotten some advise on outlook and dealing with it from my family. And they were right. But, hearing it from others going though it gives instant credence. It's helping a lot in terms of getting back to life.
- Visits. Going through a stem cell transplant makes visitation tricky because of the immune system weakness. A lot of people, primarily family, wanted to visit, and that was good. Some people seem to want to lay eyes on you, see that you're OK, or whatever. It helped that they were here, but also it helped them, too.