Our Network of Support

After emphasizing the importance of support groups in last month’s column, we thought it appropriate to expand upon other aspects of support in our lives. The idea of accepting help isn’t comfortable for us and the prospect of asking for it is even more difficult.

Many of you who are facing ALS may at first resist the idea of asking for help, as we did. But we’ve found, through the thoughtfulness of an incredible network of friends and family, that people want and need to help others, including us.

People feel helpless when they see another hurting and are unable to assist them. After our diagnosis, countless people asked what they could do to help. Physically, because there weren’t a lot of immediate changes, we didn’t have a lot of requests for them.

We decided to move from our two-story house into a ranch-style, single-level home before we had to do it for the preservation of Steven’s leg muscles. The prospect of moving is never a fun one, but we were overwhelmed when some of Steven’s former co-workers from Sprint Communications coordinated with Graebel Van Lines to donate a moving package that included the laborious task of packing. We enthusiastically said yes to help in this form — and those who put this gift together seemed to get genuine pleasure in doing so.

On a person-to-person level it’s a little different, and we’re still learning. People in our network would offer to help in many aspects of our daily life. At first, we felt like we didn’t want to inconvenience anyone by accepting.

What we didn’t realize is the power of letting someone help and the mutual benefits doing so provides. We’re not talking about the full-blown tasks of personal caregiving. Mowing the lawn, grocery shopping, babysitting and moving heavy objects are just a few of the things that make a huge difference to us at this stage of the illness. It’s been our experience that when people are given the opportunity to help, it actually makes them feel good to play a part in fighting ALS.

It took us a little time to figure that out. Shortly after we were diagnosed, we were asked by our local MDA staff if we’d like to attend a fund-raising Lock-Up. While there, we introduced ourselves to the participants as clients of MDA and personally thanked them for what they were doing. And our gratitude was returned severalfold when we could see in their eyes the recognition that their efforts were making a difference on a personal level. Thanking them made us feel useful and appreciated, as well as grateful.

It’s important for us to remember that, just because someone offers help at one time, it isn’t guaranteed nor do we expect they can do the same things six months down the line. People’s lives are constantly changing, and we don’t try to “save” offers of help until we think we really need them.

When people learn that you have an ALS diagnosis, your relationships will change. Some people won’t know how to interact with you, but others’ devotion and caring will pleasantly surprise you. In our case we’ve been very fortunate to have both emotional and physical support come from more directions than we could have ever imagined.

As Steven’s symptoms progress, it wouldn’t surprise us if many of the people in our current support network become part of our “Share the Care” circle. These relationships are invaluable when dealing with ALS for reasons we’re still realizing. We’ve discovered that help is out there in places we would never have expected to find it. But it’s our responsibility to let the help happen.